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In 2014, he launched.\u003c/p>\n\u003cp>In 2015, he was hit with a substantial fine and a firestorm of \u003ca href=\"https://www.washingtonpost.com/news/the-switch/wp/2015/09/17/apps-are-making-health-claims-but-they-may-not-have-the-science-to-back-them-up/\" target=\"_blank\">bad press\u003c/a>.\u003c/p>\n\u003cp>Seitz is the academic behind \u003ca href=\"https://ultimeyesvision.com/\" target=\"_blank\">UltimEyes\u003c/a>, the vision improvement app that \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2015/09/ftc-charges-marketers-vision-improvement-app-deceptive-claims\">got dinged by the Federal Trade Commission (FTC)\u003c/a> for $150,000 last week for making deceptive claims about the app's efficacy. Seitz and his business partner, Adam Goldberg, are the co-owners and only employees of Carrot Neurotechnology, Inc., the company that sells UltimEyes. Seitz told KQED in an interview Tuesday he and Goldberg had to pony up $75,000 each.\u003c/p>\n\u003caside class=\"pullquote alignright\">“If you look at the mobile apps being promoted, it’s still the wild west out there.\"\u003ccite>Attorney Bradley Merrill Thompson\u003c/cite>\u003c/aside>\n\u003cp>As for the legal fees, he said, \"Don't ask me about that. It's crazy.\"\u003c/p>\n\u003cp>Aside from the money owed, Seitz and Goldberg \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/150917carrotneuroorder.pdf\" target=\"_blank\">agreed\u003c/a> to stop making claims about the mobile app's ability to improve vision. Prior to the FTC's involvement, \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/150917carrotneuroexhibits.pdf\" target=\"_blank\">promotional material and language\u003c/a> on the UltimEyes website (still available on the Apple and Google Play app stores, for $5.99) said the app was “scientifically shown\" to do just that.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/150917carrotneurocmpt.pdf\" target=\"_blank\">FTC complaint\u003c/a> against Carrot Neurotechnology lists an array of related assertions on that theme, including one that the app improved vision an average of 31 percent and two lines on the standard \u003ca href=\"http://www.nytimes.com/2013/05/26/magazine/who-made-that-eye-chart.html?_r=0\" target=\"_blank\">Stellen eye chart\u003c/a>, and another that it helps mitigate \u003ca href=\"http://www.mayoclinic.org/diseases-conditions/presbyopia/basics/definition/con-2003226\" target=\"_blank\">presbyopia\u003c/a>, the gradual loss of the ability to focus on nearby objects.\u003c/p>\n\u003cp>The FTC also reprimanded Carrot for not disclosing Seitz’s connection to the company when it cited his own research. Seitz says as soon as the FTC brought that to the company's attention, it disclosed the potential conflict of interest on its site.\u003c/p>\n\u003cp>\u003cstrong>Standing by Claims\u003c/strong>\u003c/p>\n\u003cp>Despite the agreement with the FTC, Seitz stands by the original UltimEyes claims. He called the FTC action “dangerous.”\u003c/p>\n\u003cp>“Is it a good thing that you have the FTC not just going after companies, but going after individuals when they’re trying to take the university mission of taking research and translating it to the public good?\" he said. \"Scientists should be incentivized to translate the research in the way I’m doing.”\u003c/p>\n\u003cp>Seitz has laid out his concerns in an \u003ca href=\"http://www.faculty.ucr.edu/~aseitz/OpenLetter.html\" target=\"_blank\">open letter \u003c/a>on his UC Riverside faculty page, asking friends and colleagues to post supportive \u003ca href=\"https://www.ftc.gov/policy/public-comments/initiative-625\" target=\"_blank\">comments \u003c/a>with the FTC during the public comment period. Seitz said “numerous scientists” have come to the defense of the company.\u003c/p>\n\u003cp>“The government really needs to be listening to scientists here,\" he said. \"They ignored experts we brought to testify and the scientific literature. They're using us as a way to establish some precedent so they can go after some larger companies in the industry.\"\u003c/p>\n\u003cp>The FTC said UltimEyes racked up more than $350,000 in U.S. sales from January 2012 to June 2015. Seitz acknowledges that if the app had hit it big, he would have gained financially. But, he said, “my main aim was to let the public get a hold of my research.” He said neither he nor his partner made any money from the app.\u003c/p>\n\u003cp>In its complaint, the FTC also cited \u003ca href=\"http://tune.pk/video/2448640/Brain-Training-Makes-Better-Batters\">a video that was posted on the UltimEyes site\u003c/a> featuring Seitz and others discussing a study involving the 2013 UC Riverside baseball team, which ostensibly improved its performance after going through the app's exercises. In the video, a researcher says players reported they could “see things in dimmer light conditions, being able to see the ball better, being able to hit the ball better.”\u003c/p>\n\u003cp>\u003cstrong>The Research\u003c/strong>\u003c/p>\n\u003cp>Seitz says UltimEyes is based on \u003ca href=\"https://www.google.com/search?q=perceptual+learning\" target=\"_blank\">perceptual learning\u003c/a>, which he describes as \"an improvement in a perceptual task induced by practice or experience. \" The National Institutes of Health gave him a \u003ca href=\"http://ucrtoday.ucr.edu/18771\" target=\"_blank\">$1.7 million grant\u003c/a> in 2013 to study the field.\u003c/p>\n\u003cp>Last year, \u003ca href=\"http://mashable.com/2014/05/01/ultimeyes-test-video/#nng4T.bGuqkP\">Mashable\u003c/a> tested the app out on an iPad and called it “half-game, half-eye exam.”\u003c/p>\n\u003cp>[Scroll to the bottom of this post for a video of the app in action.]\u003c/p>\n\u003cp>The UC Riverside baseball experiment was also the subject of a \u003ca href=\"http://www.cell.com/current-biology/abstract/S0960-9822(14)00005-0\">paper published in Current Biology\u003c/a>, co-authored by Seitz. (Not to mention the subject of a \u003ca href=\"http://www.scpr.org/news/2014/03/28/43098/how-neuroscience-is-helping-uc-riverside-baseball/\" target=\"_blank\">Southern California Public Radio story\u003c/a> in 2014).\u003c/p>\n\u003cp>That was one of three peer-reviewed studies, Seitz says, that prove UltimEyes does what it said. He said the FTC went after the app because the agency wants to see randomized, double blind studies to substantiate such claims. Seitz does not agree with that standard.\u003c/p>\n\u003cp>“They’re saying that if research is not done with a double blind placebo study, it doesn’t provide evidence of anything. ... But if you talk with most scientists, they say that there are tons of studies that use that methodology that are junk, and tons of studies that don’t use it that are informative.\u003c/p>\n\u003cp>“It’s a useful study design that provides information and context. It has great purpose, but there are many circumstances -- and this research is actually one of them -- where it doesn’t apply.”\u003c/p>\n\u003cp>The FTC declined to comment.\u003c/p>\n\u003cp>\u003cstrong>Federal Agencies \"Doing a Reasonable Job\" of Policing Apps\u003c/strong>\u003c/p>\n\u003cp>Dr. John Halamka, co-chair of the federal Health Information Technology Standards Committee, which advises the U.S. Department of Health and Human Services on technology and health care, does not agree with Seitz that the FTC overreached in taking action against his app. He says requiring a stringent level of proof is appropriate here.\u003c/p>\n\u003cp>\"This is not one that is just face valid, or peer review could say, ‘okay sounds reasonable.’ It needs to be proven,\" he said, adding that peer review doesn't prove \"rigorous scientific evaluation of a phenomena.\"\u003c/p>\n\u003cp>Halamka said using UltimEyes presents a certain level of risk to the public because it involves diagnosis or therapy.\u003c/p>\n\u003cp>\"In the case of apps that are making claims that may or may not be true, if this is a therapy claiming a result, I think all of our federal agencies are doing a reasonable job to ask for rigor.\"\u003c/p>\n\u003cp>\u003cstrong>More to Come?\u003c/strong>\u003c/p>\n\u003cp>Enforcement actions like the one against UltimEyes are probably going to happen more frequently, says Bradley Merrill Thompson, a lawyer at Epstein, Becker & Green who works on regulatory issues with medical device and drug companies.\u003c/p>\n\u003cp>“The agreement is the next step in a whole series of cases the FTC has brought with respect to mobile applications,\" he said. Last month, the FTC \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2015/08/melanoma-detection-app-sellers-barred-making-deceptive-health\" target=\"_blank\">barred a company\u003c/a> from making claims that the“Mole Detective” line of apps could detect melanoma.\u003c/p>\n\u003cp>\"I fear that there will be a lot more cases, ” Merrill Thompson said. \"If you look at the mobile apps being promoted, it’s still the wild west out there. There’s still a lot of very small organizations operating out of their garage, making boastful claims about their technology.\"\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/futureofyou/\">KQED Future of You\u003c/a> editor Christina Farr wrote about the \u003ca href=\"http://www.reuters.com/article/2014/06/10/us-mobilephone-healthcare-idUSKBN0EL23M20140610\" target=\"_blank\">proliferation of unproven claims\u003c/a> by health-related apps for Reuters in 2014. She reported that a recent study from the New England Center for Investigative Research revealed that of the 1,500 health apps it evaluated, 20 percent claimed to treat or cure medical problems, but only a small percentage of them had been clinically validated.\u003c/p>\n\u003cp>Farr wrote that the FDA lacks the resources to monitor all the health-related apps on the market.\u003c/p>\n\u003cp>Bradley Merrill Thompson says the FDA has been “suspiciously quiet” on the topic.\u003c/p>\n\u003cp>“One would have to be suspicious that the FDA and FTC are collaborating behind the scenes, and the FTC has agreed to be the bad cop,” said Merrill Thompson. “The FDA has been embattled over the past few years as being too heavy-handed and too burdensome in regard to mobile apps.”\u003c/p>\n\u003cp>He explained that in a case like the one against UltimEyes, the FTC is viewing the app as a medical device, which comes under the purview of both agencies.\u003c/p>\n\u003cp>“Clearly there’s overlap,” he said, and either agency could have brought an action.\u003c/p>\n\u003cp>[vimeo 90324562 w=500 h=313]\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>This post has been updated to reflect the FTC's declining to comment.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"A UC Riverside psychology professor calls the FTC action against him and his business partner 'dangerous.'","status":"publish","parent":0,"modified":1443116985,"stats":{"hasAudio":false,"hasVideo":true,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":42,"wordCount":1478},"headData":{"title":"UC Riverside Professor Slams Feds, Stands By His Health App | KQED","description":"A UC Riverside psychology professor calls the FTC action against him and his business partner 'dangerous.'","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"42356 http://ww2.kqed.org/futureofyou/?p=42356","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/09/23/uc-riverside-professor-slams-feds-stands-by-his-health-app/","disqusTitle":"UC Riverside Professor Slams Feds, Stands By His Health App","path":"/futureofyou/42356/uc-riverside-professor-slams-feds-stands-by-his-health-app","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>UC Riverside professor of psychology Aaron Seitz had an idea for a mobile health app based on his area of research. In 2014, he launched.\u003c/p>\n\u003cp>In 2015, he was hit with a substantial fine and a firestorm of \u003ca href=\"https://www.washingtonpost.com/news/the-switch/wp/2015/09/17/apps-are-making-health-claims-but-they-may-not-have-the-science-to-back-them-up/\" target=\"_blank\">bad press\u003c/a>.\u003c/p>\n\u003cp>Seitz is the academic behind \u003ca href=\"https://ultimeyesvision.com/\" target=\"_blank\">UltimEyes\u003c/a>, the vision improvement app that \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2015/09/ftc-charges-marketers-vision-improvement-app-deceptive-claims\">got dinged by the Federal Trade Commission (FTC)\u003c/a> for $150,000 last week for making deceptive claims about the app's efficacy. Seitz and his business partner, Adam Goldberg, are the co-owners and only employees of Carrot Neurotechnology, Inc., the company that sells UltimEyes. Seitz told KQED in an interview Tuesday he and Goldberg had to pony up $75,000 each.\u003c/p>\n\u003caside class=\"pullquote alignright\">“If you look at the mobile apps being promoted, it’s still the wild west out there.\"\u003ccite>Attorney Bradley Merrill Thompson\u003c/cite>\u003c/aside>\n\u003cp>As for the legal fees, he said, \"Don't ask me about that. It's crazy.\"\u003c/p>\n\u003cp>Aside from the money owed, Seitz and Goldberg \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/150917carrotneuroorder.pdf\" target=\"_blank\">agreed\u003c/a> to stop making claims about the mobile app's ability to improve vision. Prior to the FTC's involvement, \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/150917carrotneuroexhibits.pdf\" target=\"_blank\">promotional material and language\u003c/a> on the UltimEyes website (still available on the Apple and Google Play app stores, for $5.99) said the app was “scientifically shown\" to do just that.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The \u003ca href=\"https://www.ftc.gov/system/files/documents/cases/150917carrotneurocmpt.pdf\" target=\"_blank\">FTC complaint\u003c/a> against Carrot Neurotechnology lists an array of related assertions on that theme, including one that the app improved vision an average of 31 percent and two lines on the standard \u003ca href=\"http://www.nytimes.com/2013/05/26/magazine/who-made-that-eye-chart.html?_r=0\" target=\"_blank\">Stellen eye chart\u003c/a>, and another that it helps mitigate \u003ca href=\"http://www.mayoclinic.org/diseases-conditions/presbyopia/basics/definition/con-2003226\" target=\"_blank\">presbyopia\u003c/a>, the gradual loss of the ability to focus on nearby objects.\u003c/p>\n\u003cp>The FTC also reprimanded Carrot for not disclosing Seitz’s connection to the company when it cited his own research. Seitz says as soon as the FTC brought that to the company's attention, it disclosed the potential conflict of interest on its site.\u003c/p>\n\u003cp>\u003cstrong>Standing by Claims\u003c/strong>\u003c/p>\n\u003cp>Despite the agreement with the FTC, Seitz stands by the original UltimEyes claims. He called the FTC action “dangerous.”\u003c/p>\n\u003cp>“Is it a good thing that you have the FTC not just going after companies, but going after individuals when they’re trying to take the university mission of taking research and translating it to the public good?\" he said. \"Scientists should be incentivized to translate the research in the way I’m doing.”\u003c/p>\n\u003cp>Seitz has laid out his concerns in an \u003ca href=\"http://www.faculty.ucr.edu/~aseitz/OpenLetter.html\" target=\"_blank\">open letter \u003c/a>on his UC Riverside faculty page, asking friends and colleagues to post supportive \u003ca href=\"https://www.ftc.gov/policy/public-comments/initiative-625\" target=\"_blank\">comments \u003c/a>with the FTC during the public comment period. Seitz said “numerous scientists” have come to the defense of the company.\u003c/p>\n\u003cp>“The government really needs to be listening to scientists here,\" he said. \"They ignored experts we brought to testify and the scientific literature. They're using us as a way to establish some precedent so they can go after some larger companies in the industry.\"\u003c/p>\n\u003cp>The FTC said UltimEyes racked up more than $350,000 in U.S. sales from January 2012 to June 2015. Seitz acknowledges that if the app had hit it big, he would have gained financially. But, he said, “my main aim was to let the public get a hold of my research.” He said neither he nor his partner made any money from the app.\u003c/p>\n\u003cp>In its complaint, the FTC also cited \u003ca href=\"http://tune.pk/video/2448640/Brain-Training-Makes-Better-Batters\">a video that was posted on the UltimEyes site\u003c/a> featuring Seitz and others discussing a study involving the 2013 UC Riverside baseball team, which ostensibly improved its performance after going through the app's exercises. In the video, a researcher says players reported they could “see things in dimmer light conditions, being able to see the ball better, being able to hit the ball better.”\u003c/p>\n\u003cp>\u003cstrong>The Research\u003c/strong>\u003c/p>\n\u003cp>Seitz says UltimEyes is based on \u003ca href=\"https://www.google.com/search?q=perceptual+learning\" target=\"_blank\">perceptual learning\u003c/a>, which he describes as \"an improvement in a perceptual task induced by practice or experience. \" The National Institutes of Health gave him a \u003ca href=\"http://ucrtoday.ucr.edu/18771\" target=\"_blank\">$1.7 million grant\u003c/a> in 2013 to study the field.\u003c/p>\n\u003cp>Last year, \u003ca href=\"http://mashable.com/2014/05/01/ultimeyes-test-video/#nng4T.bGuqkP\">Mashable\u003c/a> tested the app out on an iPad and called it “half-game, half-eye exam.”\u003c/p>\n\u003cp>[Scroll to the bottom of this post for a video of the app in action.]\u003c/p>\n\u003cp>The UC Riverside baseball experiment was also the subject of a \u003ca href=\"http://www.cell.com/current-biology/abstract/S0960-9822(14)00005-0\">paper published in Current Biology\u003c/a>, co-authored by Seitz. (Not to mention the subject of a \u003ca href=\"http://www.scpr.org/news/2014/03/28/43098/how-neuroscience-is-helping-uc-riverside-baseball/\" target=\"_blank\">Southern California Public Radio story\u003c/a> in 2014).\u003c/p>\n\u003cp>That was one of three peer-reviewed studies, Seitz says, that prove UltimEyes does what it said. He said the FTC went after the app because the agency wants to see randomized, double blind studies to substantiate such claims. Seitz does not agree with that standard.\u003c/p>\n\u003cp>“They’re saying that if research is not done with a double blind placebo study, it doesn’t provide evidence of anything. ... But if you talk with most scientists, they say that there are tons of studies that use that methodology that are junk, and tons of studies that don’t use it that are informative.\u003c/p>\n\u003cp>“It’s a useful study design that provides information and context. It has great purpose, but there are many circumstances -- and this research is actually one of them -- where it doesn’t apply.”\u003c/p>\n\u003cp>The FTC declined to comment.\u003c/p>\n\u003cp>\u003cstrong>Federal Agencies \"Doing a Reasonable Job\" of Policing Apps\u003c/strong>\u003c/p>\n\u003cp>Dr. John Halamka, co-chair of the federal Health Information Technology Standards Committee, which advises the U.S. Department of Health and Human Services on technology and health care, does not agree with Seitz that the FTC overreached in taking action against his app. He says requiring a stringent level of proof is appropriate here.\u003c/p>\n\u003cp>\"This is not one that is just face valid, or peer review could say, ‘okay sounds reasonable.’ It needs to be proven,\" he said, adding that peer review doesn't prove \"rigorous scientific evaluation of a phenomena.\"\u003c/p>\n\u003cp>Halamka said using UltimEyes presents a certain level of risk to the public because it involves diagnosis or therapy.\u003c/p>\n\u003cp>\"In the case of apps that are making claims that may or may not be true, if this is a therapy claiming a result, I think all of our federal agencies are doing a reasonable job to ask for rigor.\"\u003c/p>\n\u003cp>\u003cstrong>More to Come?\u003c/strong>\u003c/p>\n\u003cp>Enforcement actions like the one against UltimEyes are probably going to happen more frequently, says Bradley Merrill Thompson, a lawyer at Epstein, Becker & Green who works on regulatory issues with medical device and drug companies.\u003c/p>\n\u003cp>“The agreement is the next step in a whole series of cases the FTC has brought with respect to mobile applications,\" he said. Last month, the FTC \u003ca href=\"https://www.ftc.gov/news-events/press-releases/2015/08/melanoma-detection-app-sellers-barred-making-deceptive-health\" target=\"_blank\">barred a company\u003c/a> from making claims that the“Mole Detective” line of apps could detect melanoma.\u003c/p>\n\u003cp>\"I fear that there will be a lot more cases, ” Merrill Thompson said. \"If you look at the mobile apps being promoted, it’s still the wild west out there. There’s still a lot of very small organizations operating out of their garage, making boastful claims about their technology.\"\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/futureofyou/\">KQED Future of You\u003c/a> editor Christina Farr wrote about the \u003ca href=\"http://www.reuters.com/article/2014/06/10/us-mobilephone-healthcare-idUSKBN0EL23M20140610\" target=\"_blank\">proliferation of unproven claims\u003c/a> by health-related apps for Reuters in 2014. She reported that a recent study from the New England Center for Investigative Research revealed that of the 1,500 health apps it evaluated, 20 percent claimed to treat or cure medical problems, but only a small percentage of them had been clinically validated.\u003c/p>\n\u003cp>Farr wrote that the FDA lacks the resources to monitor all the health-related apps on the market.\u003c/p>\n\u003cp>Bradley Merrill Thompson says the FDA has been “suspiciously quiet” on the topic.\u003c/p>\n\u003cp>“One would have to be suspicious that the FDA and FTC are collaborating behind the scenes, and the FTC has agreed to be the bad cop,” said Merrill Thompson. “The FDA has been embattled over the past few years as being too heavy-handed and too burdensome in regard to mobile apps.”\u003c/p>\n\u003cp>He explained that in a case like the one against UltimEyes, the FTC is viewing the app as a medical device, which comes under the purview of both agencies.\u003c/p>\n\u003cp>“Clearly there’s overlap,” he said, and either agency could have brought an action.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"vimeo","attributes":{"named":{"w":"500","h":"313","label":"90324562"},"numeric":["90324562"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>This post has been updated to reflect the FTC's declining to comment.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/42356/uc-riverside-professor-slams-feds-stands-by-his-health-app","authors":["80"],"programs":["futureofyou_54"],"categories":["futureofyou_452","futureofyou_73"],"tags":["futureofyou_596","futureofyou_469","futureofyou_453","futureofyou_270","futureofyou_80","futureofyou_547"],"featImg":"futureofyou_43259","label":"futureofyou_54"},"futureofyou_21578":{"type":"posts","id":"futureofyou_21578","meta":{"index":"posts_1591205157","site":"futureofyou","id":"21578","score":null,"sort":[1439394766000]},"guestAuthors":[],"slug":"convenience-or-loyalty-what-do-millennials-value-more-when-it-comes-to-their-health","title":"Are Millennials Ready to Ditch their Regular Doctor?","publishDate":1439394766,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Unlike previous generations, young people today have countless options when it comes to their medical care. Millennials can video chat with a doctor practicing anywhere in the country, or sign up with a concierge medical group and schedule an appointment with the next-available provider online.\u003c/p>\n\u003cp>A millennial myself, I haven't had a steady primary care doctor since I moved to the U.S. four years ago. I prize convenience over anything else, even if it means having to repeat basic information like my allergies and family history. Over the past few months, I've interviewed more than a dozen millennials and a range of health experts to find out whether I'm the exception or the norm, and whether doctor-patient loyalty is truly a thing of the past.\u003c/p>\n\u003cp>My friend Olivia June Poole couldn't tell me the name of her primary care doctor. When she's feeling unwell, she makes an appointment online through San Francisco-based \u003ca href=\"http://www.onemedical.com/\">One Medical\u003c/a>, a new brand of concierge care that prides itself on its online offerings.\u003c/p>\n\u003cp>\"I personally don't care what doctor I see as long as they're competent, they have access to my medical records, and I can see them as soon as I need to,\" said Poole, a technology entrepreneur in her late twenties.\u003c/p>\n\u003cp>Almost all of the millennials I spoke with said they had high expectations for their primary care and were willing to \"doctor shop\" until they felt satisfied. Most saw value in same-day appointments, online scheduling and access to their medical record, as well as the option to text or email the doctor between visits.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>These days, \"the notion of having a single doctor that is theirs is a foreign concept\" to millennials, said Dr. Pat Basu, the chief medical officer at \u003ca href=\"http://www.doctorondemand.com/\">Doctor On Demand\u003c/a>, a San Francisco company that offers video visits with doctors for $40 per session.\u003c/p>\n\u003cp>\u003cstrong>Is the Lack of Loyalty a Bad Thing? \u003c/strong>\u003c/p>\n\u003cp>Unfortunately, I did not find a large-scale dataset to prove that millennials are less loyal to their doctor than previous generations -- one may not exist yet. But bits and pieces of research paint a picture of a millennial-set that is increasingly demanding of their primary care doctors.\u003c/p>\n\u003caside class=\"pullquote alignright\">“The notion of having a single doctor that is theirs is a foreign concept\"\u003cbr>\n\u003ccite>Dr. Pat Basu, chief medical officer at Doctor On Demand\u003c/cite>\u003c/aside>\n\u003cp>A 2012 survey from Harris Poll, a market research firm, found a disparity between the desire for online health services and the availability of those services. Among those surveyed, 52 percent of baby boomers said they were \"very satisfied\" with their health care experience, compared to 48 percent of Gen Xers and just 35 percent of millennials.\u003c/p>\n\u003cp>Services like Doctor On Demand do offer people the option to see the same doctor again. But according to Basu, 30 to 40 percent of patients do not typically maintain a relationship with one doctor, as it means longer wait times. That number jumps to more than 50 percent for patients in their twenties.\u003c/p>\n\u003cp>But copious data does exist to show that there's still a great deal of value in a doctor-patient relationship, particularly for those with chronic or complex medical conditions. For instance, \u003ca href=\"http://content.healthaffairs.org/content/34/7/1113.abstract\">recently-published research\u003c/a> in the journal Health Affairs found that in California, continuity with a regular source of primary care leads to fewer hospitalizations and emergency room visits.\u003c/p>\n\u003cp>\"Even in this digital age, someway, somehow there needs to be a connection [between doctor and patient],\" said Paul Grundy, IBM's director of healthcare transformation and the founding president of the \u003ca href=\"https://www.pcpcc.org/\">Patient Centered Primary Care Collaborative\u003c/a>, a coalition of health care providers, patient advocates and employers based in Washington DC that advocates for higher quality care at a lower cost.\u003c/p>\n\u003cp>Grundy's research from 2008 found that those who have a regular relationship with a primary care doctor, or \"healer\" as he calls them, cost the health system one-third less and experience a 19 percent lower mortality rate over a 15-year window than those who can't name their primary care doctor.\u003c/p>\n\u003cp>\"If you have a medical condition like cancer or HIV, then you should value the relationship,\" added Bob Kocher, an investor at health care-focused investment firm \u003ca href=\"http://www.venrock.com/\">Venrock\u003c/a> and a former specialist assistant to President Obama who helped write the Affordable Care Act.\u003c/p>\n\u003cp>According to Kocher, there isn't an easy way for one doctor to share instructions or learnings for the next doctor. Information can get lost in the shuffle. Patients may undergo repeat tests, and will very likely need to spend time filling out a family history.\u003c/p>\n\u003cp>\"There's certainly a lot lost when the next doctor tries to figure out what to do with you,\" he said.\u003c/p>\n\u003cp>\u003cstrong>Wanting it All\u003c/strong>\u003c/p>\n\u003cp>What surprised me in my research is that while millennials do shop around for primary care, similar to how they compare auto insurance or airline flights, many said they were willing to commit once they've found a doctor who fits the bill. Others told me that they would prioritize seeing their regular doctor and would only consider seeing a new doctor via Doctor On Demand or One Medical if the wait time for a visit surpassed a couple days.\u003c/p>\n\u003cp>Ali Boldish, 28, of Medford, Ore., still values loyalty above all else. She said she has taken the time to choose a doctor who will spend time really listening to her, rather than staring at a screen or hastening her out the door after a few minutes.\u003c/p>\n\u003cp>\"I trust they [my doctor] will be open and honest with me and that they trust me to hear not only my worries but my thoughts as well and take those into account,” she said. “I expect not to be rushed.”\u003c/p>\n\u003cp>During a recent trip to the East Coast, I paid a visit to Manhattan-based \u003ca href=\"https://www.zocdoc.com/\">ZocDoc\u003c/a>, a website that helps millions of patients each month across the U.S. schedule doctor's visits. The vast majority of people who use ZocDoc are under the age of 40.\u003c/p>\n\u003caside class=\"pullquote alignright\">“Even in this digital age, someway, somehow there needs to be a connection [between doctor and patient]\"\u003cbr>\n\u003ccite>Paul Grundy, IBM's director of healthcare transformation \u003c/cite>\u003c/aside>\n\u003cp>Many patients who use ZocDoc hold a similar view as Ali Boldish. Three out of four returning patients will choose the same doctor, company spokeswoman Amy Juaristi said, adding that many of the doctors who have signed up to ZocDoc offer texts and email communication as well as weekend and evening appointments to appeal to busy young professionals.\u003c/p>\n\u003cp>\"Twenty-somethings are extremely loyal to their primary doctor if it means they don't have to give up on convenience. We try to foster that,\" said Oliver Kharraz, the company's president and founder. In order words, millennials are willing to wait a bit to see their regular doctor, but not a few weeks or months.\u003c/p>\n\u003cp>Nikolaos Bonatsos, a 31-year-old venture capitalist based in Palo Alto, has been seeing the same doctor for four years. Recently, he said he felt a bout of fatigue and tried to schedule a time to talk about his symptoms. Only when he didn't hear back for two days, did he opt to schedule an online visit via One Medical with a doctor who happened to be available.\u003c/p>\n\u003cp>\"F\u003cspan class=\"s1\">or small stuff, do I have loyalty? No,\" he said. \u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">\"In the era of text messaging and instant gratification, speed matters a lot. Traditional health providers don't do well,\" he added. \"So if you are a techie or a hypochondriac you start looking around for other alternatives.\"\u003c/span>\u003c/p>\n\u003cp>For their part, primary care groups say they're doing their best to improve the experience for young people, so they don't flock to a virtual alternative.\u003c/p>\n\u003cp>Dr. Robert Wergin of the \u003ca href=\"http://www.aafp.org/about.html\">American Academy of Family Physicians\u003c/a> said the organization conducts surveys of its members every year, which show a steady increase in doctors modernizing their practices by offering email communication and online access to billing and/or medical records since 2008. The American Academy of Family Physicians represents over 120,000 U.S. doctors.\u003c/p>\n\u003cp>\"Our approach is to encourage doctors to think about what a millennial would want and adapt,\" Wergin said. \"We still think patients benefit from having a consistent physician, or at least gravitating to one when they can.\"\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Do you value your relationship with your primary care doctor? Have you ever consulted with your doctor via video chat? Share your story with me at cfarr@kqed.org \u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Unlike previous generations, young people today have countless options when it comes to their medical care.","status":"publish","parent":0,"modified":1439423778,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":31,"wordCount":1523},"headData":{"title":"Are Millennials Ready to Ditch their Regular Doctor? | KQED","description":"Unlike previous generations, young people today have countless options when it comes to their medical care.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"21578 http://ww2.kqed.org/futureofyou/?p=21578","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/08/12/convenience-or-loyalty-what-do-millennials-value-more-when-it-comes-to-their-health/","disqusTitle":"Are Millennials Ready to Ditch their Regular Doctor?","path":"/futureofyou/21578/convenience-or-loyalty-what-do-millennials-value-more-when-it-comes-to-their-health","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Unlike previous generations, young people today have countless options when it comes to their medical care. Millennials can video chat with a doctor practicing anywhere in the country, or sign up with a concierge medical group and schedule an appointment with the next-available provider online.\u003c/p>\n\u003cp>A millennial myself, I haven't had a steady primary care doctor since I moved to the U.S. four years ago. I prize convenience over anything else, even if it means having to repeat basic information like my allergies and family history. Over the past few months, I've interviewed more than a dozen millennials and a range of health experts to find out whether I'm the exception or the norm, and whether doctor-patient loyalty is truly a thing of the past.\u003c/p>\n\u003cp>My friend Olivia June Poole couldn't tell me the name of her primary care doctor. When she's feeling unwell, she makes an appointment online through San Francisco-based \u003ca href=\"http://www.onemedical.com/\">One Medical\u003c/a>, a new brand of concierge care that prides itself on its online offerings.\u003c/p>\n\u003cp>\"I personally don't care what doctor I see as long as they're competent, they have access to my medical records, and I can see them as soon as I need to,\" said Poole, a technology entrepreneur in her late twenties.\u003c/p>\n\u003cp>Almost all of the millennials I spoke with said they had high expectations for their primary care and were willing to \"doctor shop\" until they felt satisfied. Most saw value in same-day appointments, online scheduling and access to their medical record, as well as the option to text or email the doctor between visits.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>These days, \"the notion of having a single doctor that is theirs is a foreign concept\" to millennials, said Dr. Pat Basu, the chief medical officer at \u003ca href=\"http://www.doctorondemand.com/\">Doctor On Demand\u003c/a>, a San Francisco company that offers video visits with doctors for $40 per session.\u003c/p>\n\u003cp>\u003cstrong>Is the Lack of Loyalty a Bad Thing? \u003c/strong>\u003c/p>\n\u003cp>Unfortunately, I did not find a large-scale dataset to prove that millennials are less loyal to their doctor than previous generations -- one may not exist yet. But bits and pieces of research paint a picture of a millennial-set that is increasingly demanding of their primary care doctors.\u003c/p>\n\u003caside class=\"pullquote alignright\">“The notion of having a single doctor that is theirs is a foreign concept\"\u003cbr>\n\u003ccite>Dr. Pat Basu, chief medical officer at Doctor On Demand\u003c/cite>\u003c/aside>\n\u003cp>A 2012 survey from Harris Poll, a market research firm, found a disparity between the desire for online health services and the availability of those services. Among those surveyed, 52 percent of baby boomers said they were \"very satisfied\" with their health care experience, compared to 48 percent of Gen Xers and just 35 percent of millennials.\u003c/p>\n\u003cp>Services like Doctor On Demand do offer people the option to see the same doctor again. But according to Basu, 30 to 40 percent of patients do not typically maintain a relationship with one doctor, as it means longer wait times. That number jumps to more than 50 percent for patients in their twenties.\u003c/p>\n\u003cp>But copious data does exist to show that there's still a great deal of value in a doctor-patient relationship, particularly for those with chronic or complex medical conditions. For instance, \u003ca href=\"http://content.healthaffairs.org/content/34/7/1113.abstract\">recently-published research\u003c/a> in the journal Health Affairs found that in California, continuity with a regular source of primary care leads to fewer hospitalizations and emergency room visits.\u003c/p>\n\u003cp>\"Even in this digital age, someway, somehow there needs to be a connection [between doctor and patient],\" said Paul Grundy, IBM's director of healthcare transformation and the founding president of the \u003ca href=\"https://www.pcpcc.org/\">Patient Centered Primary Care Collaborative\u003c/a>, a coalition of health care providers, patient advocates and employers based in Washington DC that advocates for higher quality care at a lower cost.\u003c/p>\n\u003cp>Grundy's research from 2008 found that those who have a regular relationship with a primary care doctor, or \"healer\" as he calls them, cost the health system one-third less and experience a 19 percent lower mortality rate over a 15-year window than those who can't name their primary care doctor.\u003c/p>\n\u003cp>\"If you have a medical condition like cancer or HIV, then you should value the relationship,\" added Bob Kocher, an investor at health care-focused investment firm \u003ca href=\"http://www.venrock.com/\">Venrock\u003c/a> and a former specialist assistant to President Obama who helped write the Affordable Care Act.\u003c/p>\n\u003cp>According to Kocher, there isn't an easy way for one doctor to share instructions or learnings for the next doctor. Information can get lost in the shuffle. Patients may undergo repeat tests, and will very likely need to spend time filling out a family history.\u003c/p>\n\u003cp>\"There's certainly a lot lost when the next doctor tries to figure out what to do with you,\" he said.\u003c/p>\n\u003cp>\u003cstrong>Wanting it All\u003c/strong>\u003c/p>\n\u003cp>What surprised me in my research is that while millennials do shop around for primary care, similar to how they compare auto insurance or airline flights, many said they were willing to commit once they've found a doctor who fits the bill. Others told me that they would prioritize seeing their regular doctor and would only consider seeing a new doctor via Doctor On Demand or One Medical if the wait time for a visit surpassed a couple days.\u003c/p>\n\u003cp>Ali Boldish, 28, of Medford, Ore., still values loyalty above all else. She said she has taken the time to choose a doctor who will spend time really listening to her, rather than staring at a screen or hastening her out the door after a few minutes.\u003c/p>\n\u003cp>\"I trust they [my doctor] will be open and honest with me and that they trust me to hear not only my worries but my thoughts as well and take those into account,” she said. “I expect not to be rushed.”\u003c/p>\n\u003cp>During a recent trip to the East Coast, I paid a visit to Manhattan-based \u003ca href=\"https://www.zocdoc.com/\">ZocDoc\u003c/a>, a website that helps millions of patients each month across the U.S. schedule doctor's visits. The vast majority of people who use ZocDoc are under the age of 40.\u003c/p>\n\u003caside class=\"pullquote alignright\">“Even in this digital age, someway, somehow there needs to be a connection [between doctor and patient]\"\u003cbr>\n\u003ccite>Paul Grundy, IBM's director of healthcare transformation \u003c/cite>\u003c/aside>\n\u003cp>Many patients who use ZocDoc hold a similar view as Ali Boldish. Three out of four returning patients will choose the same doctor, company spokeswoman Amy Juaristi said, adding that many of the doctors who have signed up to ZocDoc offer texts and email communication as well as weekend and evening appointments to appeal to busy young professionals.\u003c/p>\n\u003cp>\"Twenty-somethings are extremely loyal to their primary doctor if it means they don't have to give up on convenience. We try to foster that,\" said Oliver Kharraz, the company's president and founder. In order words, millennials are willing to wait a bit to see their regular doctor, but not a few weeks or months.\u003c/p>\n\u003cp>Nikolaos Bonatsos, a 31-year-old venture capitalist based in Palo Alto, has been seeing the same doctor for four years. Recently, he said he felt a bout of fatigue and tried to schedule a time to talk about his symptoms. Only when he didn't hear back for two days, did he opt to schedule an online visit via One Medical with a doctor who happened to be available.\u003c/p>\n\u003cp>\"F\u003cspan class=\"s1\">or small stuff, do I have loyalty? No,\" he said. \u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">\"In the era of text messaging and instant gratification, speed matters a lot. Traditional health providers don't do well,\" he added. \"So if you are a techie or a hypochondriac you start looking around for other alternatives.\"\u003c/span>\u003c/p>\n\u003cp>For their part, primary care groups say they're doing their best to improve the experience for young people, so they don't flock to a virtual alternative.\u003c/p>\n\u003cp>Dr. Robert Wergin of the \u003ca href=\"http://www.aafp.org/about.html\">American Academy of Family Physicians\u003c/a> said the organization conducts surveys of its members every year, which show a steady increase in doctors modernizing their practices by offering email communication and online access to billing and/or medical records since 2008. The American Academy of Family Physicians represents over 120,000 U.S. doctors.\u003c/p>\n\u003cp>\"Our approach is to encourage doctors to think about what a millennial would want and adapt,\" Wergin said. \"We still think patients benefit from having a consistent physician, or at least gravitating to one when they can.\"\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Do you value your relationship with your primary care doctor? Have you ever consulted with your doctor via video chat? Share your story with me at cfarr@kqed.org \u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/21578/convenience-or-loyalty-what-do-millennials-value-more-when-it-comes-to-their-health","authors":["3252"],"categories":["futureofyou_452","futureofyou_1"],"tags":["futureofyou_453","futureofyou_80","futureofyou_558","futureofyou_559"],"featImg":"futureofyou_24778","label":"futureofyou"},"futureofyou_14022":{"type":"posts","id":"futureofyou_14022","meta":{"index":"posts_1591205157","site":"futureofyou","id":"14022","score":null,"sort":[1437421310000]},"guestAuthors":[],"slug":"the-final-frontier-entrepreneurs-move-into-end-of-life-planning","title":"The Final Frontier: Entrepreneurs Move Into End of Life Planning","publishDate":1437421310,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>When 40-year-old investment banker Thatcher Bell decided to review his end-of-life care wishes and important medical and legal documents with his wife and mother, he expected awkward and confusing exchanges that would last for hours.\u003c/p>\n\u003cp>But the New York-based father of two signed up for a new online service called \u003ca href=\"https://www.everplans.com/\">Everplans\u003c/a> and was pleasantly surprised how it helped him to initiate those conversations and make them a little less difficult and scary.\u003c/p>\n\u003cp>“I’m married, have a couple kids and somehow along the way became an adult,” he says. Although he is healthy, Bell said he wanted his final wishes documented, because death may come at anytime and without warning.\u003c/p>\n\u003cp>“I had put together a will and so forth, but my wife and mother would ask me, ‘Where is this piece of information in case something should happen?’ I never had a great answer,\" he said.\u003c/p>\n\u003cp>Bell joined Everplans in 2014 and uses the service to store information his family-members may need in case of serious illness or incapacity. They can view that information via a smartphone or desktop computer.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>“Talking about this stuff, even gathering the relevant information, definitely isn’t fun,” he says. \"But I thought the product did a pretty good job of prompting me to fill stuff out in kind-of a spoon-fed fashion.”\u003c/p>\n\u003cp>N\u003cstrong>ew Apps and Services\u003c/strong>\u003c/p>\n\u003cp>People planning for their end-of-life care and looking to store medical, legal and financial documents have a host of new online services vying for the attention of the baby boomer population.\u003c/p>\n\u003cp>Most online planning services, or “storage vaults,” help people identify and upload advance health care directives to be quickly and easily accessed by loved ones. An advance directive, which may take the form of a living will or power of attorney, can help ensure one’s medical wishes are honored by emergency medical providers and physicians.\u003c/p>\n\u003cp>If these products inspire people of all backgrounds to carefully consider their end-of-life wishes, \"such a product can be of immense value,\" said Randi Belisomo, a Chicago-based journalist and co-founder of \u003ca href=\"http://www.lifemattersmedia.org\">Life Matters Media\u003c/a>, a nonprofit providing content related to end-of-life decision-making.\u003c/p>\n\u003cp>But Belisomo says online planning services are not for everyone – because there is no “right way” for a person to spend their final days or “one size fits all” advance directive.\u003c/p>\n\u003cp>\u003ca href=\"https://www.everplans.com\">Everplans\u003c/a> cofounder Abby Schneiderman said she wants conversations about end-of-life care and death to become as common and accepted as talk about weddings or babies.\u003c/p>\n\u003cp>The Everplans website provides step-by-step guides for end-of-life planning and advice for attending funerals, religious burials and caring for seriously ill loved ones, among other things.\u003c/p>\n\u003cp>The idea came to Schneiderman in the spring of 2010, when she was planning for her wedding.\u003c/p>\n\u003cp>“There are plenty of online resources for the bride-to-be or parent-to-be and even retirement, but after that it started to get empty,\" she said. \"There didn't seem to be any modern or sophisticated resources guiding people through end-of-life planning, but end-of-life affects everybody.”\u003c/p>\n\u003cp>On Everplans, people appoint trusted loved ones as “deputies” who are able to view documents from any Internet-capable device. Full-access to the site costs $75 per year. Schneiderman said the company just added a new section for people to pass on things like family histories, genealogies, photos or even recipes.\u003c/p>\n\u003cp>Similar to Everplans, San Francisco-based \u003ca href=\"https://estateassist.com\">Estate Assist\u003c/a> provides a digital space for people to upload and store passwords, photos and financial documents for online or offline use.\u003c/p>\n\u003cp>Founder Woodrow Levin was inspired to create Estate Assist nearly a decade ago, after witnessing his father struggle to find paperwork after grandmother’s death.\u003c/p>\n\u003cp>“(Estate Assist) protects your financial and digital assets, as well as important life documents, such as life insurance, 401(K), bank account, brokerage account,” he says. Estate Assist keeps all that information secure and updated. In case of death, that information is sent to pre-approved loved ones and financial advisors.\u003c/p>\n\u003cp>Levin declined to state how many people pay for the service, which launched in 2014. It costs $99 ($149 with identity theft protection) per year or 9.95 per month ($14.95 with identity theft protection).\u003c/p>\n\u003cp>\u003cstrong>Changing the Conversation Around Death\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>As America’s 65 and older population expands to 72 million by 2030, roughly 20 percent of the total population, the “Silver Tsunami” coincides with the rapid growth of online storage, or “cloud.”\u003c/p>\n\u003cp>“We're starting to get over the complete reluctance to understand death as a natural part of life and bring it more into conversation,” says Kerry Shannon, chief executive officer and founder of Chicago-based \u003ca href=\"https://www.finalroadmap.com\">Final Roadmap\u003c/a>, one of the growing number of Internet services for end-of-life planning.\u003c/p>\n\u003cp>“I give baby boomer women a lot of credit for this. They changed the way we address childbirth – from doing just what the doctor says and being asleep and going along – to being an active participant,\" she said. \"I see them largely doing the same thing around end of life, as they look at their parents and know what they don't want their parents to go through and what they want for themselves.”\u003c/p>\n\u003cp>Final Roadmap provides a set of tools to guide people through end-of-life planning. Those who sign up complete six different sections of the toolkit: medical care, legal and financial, physical death, visitation and services, messages for loved ones after death (attach letters, messages and videos) and notifications. Members may change or supplement these sections at any time. It costs a one-time fee of $249.\u003c/p>\n\u003cp>But Ronette Leal McCarthy, and end-of-life care advocate and legal counsel to Chicago-based \u003ca href=\"http://www.elementscremation.com\">Elements: The Cremation Company\u003c/a>, cautions against relying solely on digital technology, especially from newer companies that may not be around in five or 10 years.\u003c/p>\n\u003cp>“A lot of these online companies are maybe three or four years old, in their infancy. I think that if you are going to utilize any online digital company you need to have some sort of paper backup,” she says. “You still need paper somewhere. You need an original copy stored somewhere.”\u003c/p>\n\u003cp>Although 90 percent of Americans say it is important to have end of life conversations with their loved ones, less than one-third have had such conversations, said McCarthy.\u003c/p>\n\u003cp>“No product can replace the value of a thoughtful conversation with family members about these plans, and the value of this conversation transcends the sharing of care choices,” Life Matters Media's Belisomo said.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cstrong>\u003cem>Disclosure: Daniel Gaitan is content producer for \u003c/em>\u003c/strong>\u003ca href=\"http://www.lifemattersmedia.org\">Life Matters Media\u003c/a>\u003cstrong>\u003cem>.\u003c/em>\u003c/strong>\u003c/p>\n\n","blocks":[],"excerpt":"Most online planning services, or “storage vaults,” help people identify and upload advance health care directives to be quickly and easily accessed by loved ones. ","status":"publish","parent":0,"modified":1477280827,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":32,"wordCount":1158},"headData":{"title":"The Final Frontier: Entrepreneurs Move Into End of Life Planning | KQED","description":"Most online planning services, or “storage vaults,” help people identify and upload advance health care directives to be quickly and easily accessed by loved ones. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"14022 http://ww2.kqed.org/futureofyou/?p=14022","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/07/20/the-final-frontier-entrepreneurs-move-into-end-of-life-planning/","disqusTitle":"The Final Frontier: Entrepreneurs Move Into End of Life Planning","path":"/futureofyou/14022/the-final-frontier-entrepreneurs-move-into-end-of-life-planning","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>When 40-year-old investment banker Thatcher Bell decided to review his end-of-life care wishes and important medical and legal documents with his wife and mother, he expected awkward and confusing exchanges that would last for hours.\u003c/p>\n\u003cp>But the New York-based father of two signed up for a new online service called \u003ca href=\"https://www.everplans.com/\">Everplans\u003c/a> and was pleasantly surprised how it helped him to initiate those conversations and make them a little less difficult and scary.\u003c/p>\n\u003cp>“I’m married, have a couple kids and somehow along the way became an adult,” he says. Although he is healthy, Bell said he wanted his final wishes documented, because death may come at anytime and without warning.\u003c/p>\n\u003cp>“I had put together a will and so forth, but my wife and mother would ask me, ‘Where is this piece of information in case something should happen?’ I never had a great answer,\" he said.\u003c/p>\n\u003cp>Bell joined Everplans in 2014 and uses the service to store information his family-members may need in case of serious illness or incapacity. They can view that information via a smartphone or desktop computer.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>“Talking about this stuff, even gathering the relevant information, definitely isn’t fun,” he says. \"But I thought the product did a pretty good job of prompting me to fill stuff out in kind-of a spoon-fed fashion.”\u003c/p>\n\u003cp>N\u003cstrong>ew Apps and Services\u003c/strong>\u003c/p>\n\u003cp>People planning for their end-of-life care and looking to store medical, legal and financial documents have a host of new online services vying for the attention of the baby boomer population.\u003c/p>\n\u003cp>Most online planning services, or “storage vaults,” help people identify and upload advance health care directives to be quickly and easily accessed by loved ones. An advance directive, which may take the form of a living will or power of attorney, can help ensure one’s medical wishes are honored by emergency medical providers and physicians.\u003c/p>\n\u003cp>If these products inspire people of all backgrounds to carefully consider their end-of-life wishes, \"such a product can be of immense value,\" said Randi Belisomo, a Chicago-based journalist and co-founder of \u003ca href=\"http://www.lifemattersmedia.org\">Life Matters Media\u003c/a>, a nonprofit providing content related to end-of-life decision-making.\u003c/p>\n\u003cp>But Belisomo says online planning services are not for everyone – because there is no “right way” for a person to spend their final days or “one size fits all” advance directive.\u003c/p>\n\u003cp>\u003ca href=\"https://www.everplans.com\">Everplans\u003c/a> cofounder Abby Schneiderman said she wants conversations about end-of-life care and death to become as common and accepted as talk about weddings or babies.\u003c/p>\n\u003cp>The Everplans website provides step-by-step guides for end-of-life planning and advice for attending funerals, religious burials and caring for seriously ill loved ones, among other things.\u003c/p>\n\u003cp>The idea came to Schneiderman in the spring of 2010, when she was planning for her wedding.\u003c/p>\n\u003cp>“There are plenty of online resources for the bride-to-be or parent-to-be and even retirement, but after that it started to get empty,\" she said. \"There didn't seem to be any modern or sophisticated resources guiding people through end-of-life planning, but end-of-life affects everybody.”\u003c/p>\n\u003cp>On Everplans, people appoint trusted loved ones as “deputies” who are able to view documents from any Internet-capable device. Full-access to the site costs $75 per year. Schneiderman said the company just added a new section for people to pass on things like family histories, genealogies, photos or even recipes.\u003c/p>\n\u003cp>Similar to Everplans, San Francisco-based \u003ca href=\"https://estateassist.com\">Estate Assist\u003c/a> provides a digital space for people to upload and store passwords, photos and financial documents for online or offline use.\u003c/p>\n\u003cp>Founder Woodrow Levin was inspired to create Estate Assist nearly a decade ago, after witnessing his father struggle to find paperwork after grandmother’s death.\u003c/p>\n\u003cp>“(Estate Assist) protects your financial and digital assets, as well as important life documents, such as life insurance, 401(K), bank account, brokerage account,” he says. Estate Assist keeps all that information secure and updated. In case of death, that information is sent to pre-approved loved ones and financial advisors.\u003c/p>\n\u003cp>Levin declined to state how many people pay for the service, which launched in 2014. It costs $99 ($149 with identity theft protection) per year or 9.95 per month ($14.95 with identity theft protection).\u003c/p>\n\u003cp>\u003cstrong>Changing the Conversation Around Death\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>As America’s 65 and older population expands to 72 million by 2030, roughly 20 percent of the total population, the “Silver Tsunami” coincides with the rapid growth of online storage, or “cloud.”\u003c/p>\n\u003cp>“We're starting to get over the complete reluctance to understand death as a natural part of life and bring it more into conversation,” says Kerry Shannon, chief executive officer and founder of Chicago-based \u003ca href=\"https://www.finalroadmap.com\">Final Roadmap\u003c/a>, one of the growing number of Internet services for end-of-life planning.\u003c/p>\n\u003cp>“I give baby boomer women a lot of credit for this. They changed the way we address childbirth – from doing just what the doctor says and being asleep and going along – to being an active participant,\" she said. \"I see them largely doing the same thing around end of life, as they look at their parents and know what they don't want their parents to go through and what they want for themselves.”\u003c/p>\n\u003cp>Final Roadmap provides a set of tools to guide people through end-of-life planning. Those who sign up complete six different sections of the toolkit: medical care, legal and financial, physical death, visitation and services, messages for loved ones after death (attach letters, messages and videos) and notifications. Members may change or supplement these sections at any time. It costs a one-time fee of $249.\u003c/p>\n\u003cp>But Ronette Leal McCarthy, and end-of-life care advocate and legal counsel to Chicago-based \u003ca href=\"http://www.elementscremation.com\">Elements: The Cremation Company\u003c/a>, cautions against relying solely on digital technology, especially from newer companies that may not be around in five or 10 years.\u003c/p>\n\u003cp>“A lot of these online companies are maybe three or four years old, in their infancy. I think that if you are going to utilize any online digital company you need to have some sort of paper backup,” she says. “You still need paper somewhere. You need an original copy stored somewhere.”\u003c/p>\n\u003cp>Although 90 percent of Americans say it is important to have end of life conversations with their loved ones, less than one-third have had such conversations, said McCarthy.\u003c/p>\n\u003cp>“No product can replace the value of a thoughtful conversation with family members about these plans, and the value of this conversation transcends the sharing of care choices,” Life Matters Media's Belisomo said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>\u003cem>Disclosure: Daniel Gaitan is content producer for \u003c/em>\u003c/strong>\u003ca href=\"http://www.lifemattersmedia.org\">Life Matters Media\u003c/a>\u003cstrong>\u003cem>.\u003c/em>\u003c/strong>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/14022/the-final-frontier-entrepreneurs-move-into-end-of-life-planning","authors":["8630"],"categories":["futureofyou_1060"],"tags":["futureofyou_527","futureofyou_453","futureofyou_528"],"featImg":"futureofyou_15488","label":"futureofyou"},"futureofyou_13651":{"type":"posts","id":"futureofyou_13651","meta":{"index":"posts_1591205157","site":"futureofyou","id":"13651","score":null,"sort":[1437051603000]},"guestAuthors":[],"slug":"what-you-need-to-know-about-the-new-surgeon-scorecard-app","title":"What You Need to Know About the New Surgeon Scorecard App","publishDate":1437051603,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>In need of a knee replacement, prostate resection or gall bladder removal? Now, you can search the \u003ca href=\"https://projects.propublica.org/surgeons/\">Surgeon Scorecard\u003c/a>, a new app from the nonprofit newsroom \u003ca href=\"https://www.propublica.org/\">ProPublica\u003c/a>, that lists the complication rates of surgeons across the United States.\u003c/p>\n\u003cp>ProPublica found half of all hospitals in America have uneven performances among their surgical staff: They have some surgeons with low complication rates and some with high rates. Therefore, it may not be enough for patients to select a well-respected academic hospital and simply hope for the best.\u003c/p>\n\u003cp>At first glance, the app is an impressive feat of data journalism, a three-year project. It includes just shy of 17,000 surgeons, and pulls data from more than 63,000 Medicare patients who were readmitted with complications between 2009 and 2013. The database also includes roughly 3,400 deaths during that period.\u003c/p>\n\u003cfigure id=\"attachment_13677\" class=\"wp-caption aligncenter\" style=\"max-width: 1090px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM.png\">\u003cimg class=\"size-full wp-image-13677\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM.png\" alt=\"Surgeons at St Mary's Medical Center in San Francisco ranked by complication rate.\" width=\"1090\" height=\"577\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM.png 1090w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM-400x212.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM-800x423.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM-960x508.png 960w\" sizes=\"(max-width: 1090px) 100vw, 1090px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Surgeons at St Mary's Medical Center in San Francisco ranked by complication rate. \u003ccite>(Screen Shot from ProPublica)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The ProPublica team of Marshall Allen, Olga Pierce and Sisi Wei told KQED they crunched an expansive data set from the federal Centers for Medicare and Medicaid Services, which administers the programs. Then they cross-referenced that data with a number of other sources. CMS agreed to provide this data to ProPublica, with strict limits on sharing the raw data to protect patient privacy.\u003c/p>\n\u003cp>The app includes information about some limitations of the data and about \u003ca href=\"https://www.propublica.org/article/surgeon-level-risk-short-methodology\">the methodology \u003c/a>used to calculate surgical complication rates. The authors stress that they took a conservative approach -- no rate is reported if the surgeon performed that procedure fewer than 20 times, for instance.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"We wouldn't have been able to come up with our methods alone,\" Pierce said. \"We were helped a lot by people who advised us on the best way to use the data.\" The help included a panel of medical experts.\u003c/p>\n\u003cp>\u003cstrong>How Should You Use the App? \u003c/strong>\u003c/p>\n\u003cp>Pierce and Wei say the app is already proving popular with patients, but they declined to disclose how many are using it. They expect that, like other health-transparency tools, it will gain traffic over time.\u003c/p>\n\u003cp>The first thing the ProPublica team wants you to know is the app is \u003cem>not \u003c/em>designed as a be-all and end-all solution. The team recommends patients and their family members use the app as a starting point when researching to find the right surgeon. Some patients may have a gut instinct about a physician, and all patients benefit from asking deeper questions before committing to a procedure.\u003c/p>\n\u003cp>The team said they hope the Surgeon Scorecard will prompt patients and surgeons to have a frank conversation about potential complications. Wei recommends patients ask their surgeon how many procedures they've performed and whether they know their own complication rate.\u003c/p>\n\u003cp>But don't try to catch your surgeon in a lie by comparing your surgeon's response to the scorecard. The Surgeon Scorecard is by no means definitive and includes some gaping holes. CMS barred ProPublica from reporting the exact number of complications if it's between one and ten. The app also doesn't include hospital stays paid for by private insurance or other government programs, like Medicaid.\u003c/p>\n\u003cp>Patient advocates stressed to KQED that the Surgeon Scorecard is just one data point to combine with many others, including transparency tools, online community forums and more. For example, Regina Holliday, a medical advocate from Grantsville, Maryland, suggests patients find out what kind of rehabilitation services are provided after a knee or hip replacement.\u003c/p>\n\u003cfigure id=\"attachment_13692\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-13692\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-800x359.png\" alt=\"A search of knee replacement performance at hospitals within 25 miles of San Francisco\" width=\"800\" height=\"359\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-800x359.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-400x179.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-960x431.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM.png 1157w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">A search of knee replacement performance at hospitals within 25 miles of San Francisco.\u003c/figcaption>\u003c/figure>\n\u003cp>Patients should also do some digging about whether it's worth getting the procedure at all, particularly if they've heard from only one doctor. And, as Holliday points out, the data don't touch on whether the procedure was successful from the point of view of former patients.\u003c/p>\n\u003cp>\u003cstrong>Is it Fair to Surgeons?\u003c/strong>\u003c/p>\n\u003cp>The scorecard has gotten positive and negative reviews from the medical community. Some physicians vehemently believe it's not useful to report a surgeon's history of complication rates at all -- and that \u003ca href=\"https://medium.com/@justinmclachlan/propublica-s-surgeonscorecard-should-be-retracted-361055589f5a\">the scorecard should be retracted\u003c/a>.\u003c/p>\n\u003cp>Meanwhile, one anonymous physician raved about the Surgeon Scorecard to\u003ca href=\"http://histalk2.com/\"> a health care blog\u003c/a>, arguing it would set them apart from less talented rivals who were reaping in cash.\u003c/p>\n\u003cp>Others take a more nuanced view.\u003c/p>\n\u003cp>Dr. Bob Wachter, Professor and Interim Chairman of the Department of Medicine at the University of California, San Francisco, said measuring quality is an imperfect science. He does acknowledge, though, that it is useful for patients.\u003c/p>\n\u003cp>In an interview, Dr. Wachter raised a number of concerns about how surgeons are portrayed in the app:\u003c/p>\n\u003cul>\n\u003cli>\u003cstrong>It's not always the surgeon's fault\u003c/strong>: The outcome of a procedure may have less to do with the surgeon and more to do with the hospital system in which they work (which includes the pharmacists, nurses and hospital leadership.) Moreover, a bad outcome may be a result of a patient failing to take their medication due to a lack of support or a psychiatric condition.\u003c/li>\n\u003cli>\u003cstrong>Some surgeons take on risky cases\u003c/strong>: The data may be skewed against surgeons who take on tricky cases, which are more likely to lead to bad outcomes. It requires a lot of data about a particular case to make sense of the ultimate outcome.\u003c/li>\n\u003cli>\u003cstrong>Some surgeons work at hospitals that care for the very sick and the very poor: \u003c/strong>Some hospitals are regularly referred patients that no others will take. Some patients may also lack social services after they've been discharged, and are more likely to be readmitted.\u003c/li>\n\u003cli>\u003cstrong>Some surgeons have a conservative practice style:\u003c/strong> They may readmit patients more regularly just to monitor them. Although, it may be possible to screen for this by checking the length of the hospital stay.\u003c/li>\n\u003c/ul>\n\u003cp>The team at ProPublica did acknowledge these points and said they took pains to mitigate them in the following ways:\u003c/p>\n\u003cul>\n\u003cli>They did not list complications when they spotted patients who \"looked unusual in some way.\" They also scanned patient records for evidence of comorbidities, like obesity and diabetes -- and did not include these patients in the database.\u003c/li>\n\u003cli>They factored the \"hospital effect\" into the model, meaning that if a hospital is known to release patients without thorough discharge instructions, it may not be the surgeon's fault.\u003c/li>\n\u003cli>They examined the number of days when a patient was readmitted. If the bulk of those stays were three days or longer, that suggested a deeper complication, rather than a conservative approach.\u003c/li>\n\u003cli>They factored into their model the socio-economic status of patients, using \u003ca href=\"http://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/InpatientRehabFacPPS/SSIData.html\">SSI data\u003c/a>. There are still be some gaps in this data, however, like the patient's mental state.\u003c/li>\n\u003c/ul>\n\u003cp>The reporters approached the project with the philosophy that surgeons' actions have a major effect on patient outcomes -- and therefore the good and bad actors should be called out. They reference the American College of Surgeons' statement of principles, saying surgeons are responsible for a patient’s entire course of care.\u003c/p>\n\u003cp>\"I will say that surgeons may not be directly responsible, but they do have a lot of power to address these things,\" Pierce said.\u003c/p>\n\u003cp>\u003cstrong>Other Limitations and Concerns\u003c/strong>\u003c/p>\n\u003cp>The most notable hole in ProPublica's data is that they only include Medicare patients. Another important limitation is their reliance on procedure codes. There is a great deal of variation in how hospitals code, \u003ca href=\"http://medicaleconomics.modernmedicine.com/medical-economics/content/tags/centers-medicare-and-medicaid-services/medicare-billing-problems-codi?page=full\">including some that even coded the wrong surgery. \u003c/a>\u003c/p>\n\u003cfigure id=\"attachment_13693\" class=\"wp-caption alignright\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/propublica2.jpg\">\u003cimg class=\"size-full wp-image-13693\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/propublica2.jpg\" alt=\"The reporting team at ProPublica's headquarters in New York City. \" width=\"640\" height=\"480\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/propublica2.jpg 640w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/propublica2-400x300.jpg 400w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The reporting team at ProPublica's headquarters in New York City. \u003ccite>(ProPublica )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>As Wachter points out, another limitation is that some complications do not lead to readmission or death, and therefore may not be included in the Surgeon Scorecard.\u003c/p>\n\u003cp>Another widely-held concern among doctors and patient advocates is that some physicians may view the Surgeon Scorecard as a benchmark -- if it continues to be popular -- and will opt against taking on tricky cases.\u003c/p>\n\u003cp>\"It's possible that surgeons get frustrated and don't want to stick their neck out in the future,\" said Julia Hallisy, a San Francisco-based patient advocate.\u003c/p>\n\u003cp>\u003cstrong>Next Steps\u003c/strong>\u003c/p>\n\u003cp>Limitations aside, it's important to note that a project like this one would not have been possible a decade ago when hospitals across the country were still relying on paper records. With health systems slowly digitizing, such transparency projects that include thousands, if not millions, of data-sets are now feasible.\u003c/p>\n\u003cp>ProPublica is currently negotiating with states to release similar data, which would include all payers. Currently, it's difficult to follow a specific patient across hospital visits when they have different insurers.\u003c/p>\n\u003cp>In coming months, the team plans to update the data-set with more recent complication rates, and make changes based on the initial feedback and concerns. They're eager to hear from you.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Have you used the Surgeon Scorecard? Got any concerns to share? Contact the team on Twitter using the hashtag #surgeonscorecard.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Considering using the Surgeon Scorecard? KQED spoke with a dozen patient advocates, surgeons and medical experts, as well as the team at ProPublica. Here are the pros and cons.","status":"publish","parent":0,"modified":1477280901,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":34,"wordCount":1551},"headData":{"title":"What You Need to Know About the New Surgeon Scorecard App | KQED","description":"Considering using the Surgeon Scorecard? KQED spoke with a dozen patient advocates, surgeons and medical experts, as well as the team at ProPublica. Here are the pros and cons.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"13651 http://ww2.kqed.org/futureofyou/?p=13651","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/07/16/what-you-need-to-know-about-the-new-surgeon-scorecard-app/","disqusTitle":"What You Need to Know About the New Surgeon Scorecard App","path":"/futureofyou/13651/what-you-need-to-know-about-the-new-surgeon-scorecard-app","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>In need of a knee replacement, prostate resection or gall bladder removal? Now, you can search the \u003ca href=\"https://projects.propublica.org/surgeons/\">Surgeon Scorecard\u003c/a>, a new app from the nonprofit newsroom \u003ca href=\"https://www.propublica.org/\">ProPublica\u003c/a>, that lists the complication rates of surgeons across the United States.\u003c/p>\n\u003cp>ProPublica found half of all hospitals in America have uneven performances among their surgical staff: They have some surgeons with low complication rates and some with high rates. Therefore, it may not be enough for patients to select a well-respected academic hospital and simply hope for the best.\u003c/p>\n\u003cp>At first glance, the app is an impressive feat of data journalism, a three-year project. It includes just shy of 17,000 surgeons, and pulls data from more than 63,000 Medicare patients who were readmitted with complications between 2009 and 2013. The database also includes roughly 3,400 deaths during that period.\u003c/p>\n\u003cfigure id=\"attachment_13677\" class=\"wp-caption aligncenter\" style=\"max-width: 1090px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM.png\">\u003cimg class=\"size-full wp-image-13677\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM.png\" alt=\"Surgeons at St Mary's Medical Center in San Francisco ranked by complication rate.\" width=\"1090\" height=\"577\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM.png 1090w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM-400x212.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM-800x423.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.05.15-PM-960x508.png 960w\" sizes=\"(max-width: 1090px) 100vw, 1090px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">Surgeons at St Mary's Medical Center in San Francisco ranked by complication rate. \u003ccite>(Screen Shot from ProPublica)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The ProPublica team of Marshall Allen, Olga Pierce and Sisi Wei told KQED they crunched an expansive data set from the federal Centers for Medicare and Medicaid Services, which administers the programs. Then they cross-referenced that data with a number of other sources. CMS agreed to provide this data to ProPublica, with strict limits on sharing the raw data to protect patient privacy.\u003c/p>\n\u003cp>The app includes information about some limitations of the data and about \u003ca href=\"https://www.propublica.org/article/surgeon-level-risk-short-methodology\">the methodology \u003c/a>used to calculate surgical complication rates. The authors stress that they took a conservative approach -- no rate is reported if the surgeon performed that procedure fewer than 20 times, for instance.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"We wouldn't have been able to come up with our methods alone,\" Pierce said. \"We were helped a lot by people who advised us on the best way to use the data.\" The help included a panel of medical experts.\u003c/p>\n\u003cp>\u003cstrong>How Should You Use the App? \u003c/strong>\u003c/p>\n\u003cp>Pierce and Wei say the app is already proving popular with patients, but they declined to disclose how many are using it. They expect that, like other health-transparency tools, it will gain traffic over time.\u003c/p>\n\u003cp>The first thing the ProPublica team wants you to know is the app is \u003cem>not \u003c/em>designed as a be-all and end-all solution. The team recommends patients and their family members use the app as a starting point when researching to find the right surgeon. Some patients may have a gut instinct about a physician, and all patients benefit from asking deeper questions before committing to a procedure.\u003c/p>\n\u003cp>The team said they hope the Surgeon Scorecard will prompt patients and surgeons to have a frank conversation about potential complications. Wei recommends patients ask their surgeon how many procedures they've performed and whether they know their own complication rate.\u003c/p>\n\u003cp>But don't try to catch your surgeon in a lie by comparing your surgeon's response to the scorecard. The Surgeon Scorecard is by no means definitive and includes some gaping holes. CMS barred ProPublica from reporting the exact number of complications if it's between one and ten. The app also doesn't include hospital stays paid for by private insurance or other government programs, like Medicaid.\u003c/p>\n\u003cp>Patient advocates stressed to KQED that the Surgeon Scorecard is just one data point to combine with many others, including transparency tools, online community forums and more. For example, Regina Holliday, a medical advocate from Grantsville, Maryland, suggests patients find out what kind of rehabilitation services are provided after a knee or hip replacement.\u003c/p>\n\u003cfigure id=\"attachment_13692\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-13692\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-800x359.png\" alt=\"A search of knee replacement performance at hospitals within 25 miles of San Francisco\" width=\"800\" height=\"359\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-800x359.png 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-400x179.png 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM-960x431.png 960w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Screen-Shot-2015-07-15-at-1.30.04-PM.png 1157w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">A search of knee replacement performance at hospitals within 25 miles of San Francisco.\u003c/figcaption>\u003c/figure>\n\u003cp>Patients should also do some digging about whether it's worth getting the procedure at all, particularly if they've heard from only one doctor. And, as Holliday points out, the data don't touch on whether the procedure was successful from the point of view of former patients.\u003c/p>\n\u003cp>\u003cstrong>Is it Fair to Surgeons?\u003c/strong>\u003c/p>\n\u003cp>The scorecard has gotten positive and negative reviews from the medical community. Some physicians vehemently believe it's not useful to report a surgeon's history of complication rates at all -- and that \u003ca href=\"https://medium.com/@justinmclachlan/propublica-s-surgeonscorecard-should-be-retracted-361055589f5a\">the scorecard should be retracted\u003c/a>.\u003c/p>\n\u003cp>Meanwhile, one anonymous physician raved about the Surgeon Scorecard to\u003ca href=\"http://histalk2.com/\"> a health care blog\u003c/a>, arguing it would set them apart from less talented rivals who were reaping in cash.\u003c/p>\n\u003cp>Others take a more nuanced view.\u003c/p>\n\u003cp>Dr. Bob Wachter, Professor and Interim Chairman of the Department of Medicine at the University of California, San Francisco, said measuring quality is an imperfect science. He does acknowledge, though, that it is useful for patients.\u003c/p>\n\u003cp>In an interview, Dr. Wachter raised a number of concerns about how surgeons are portrayed in the app:\u003c/p>\n\u003cul>\n\u003cli>\u003cstrong>It's not always the surgeon's fault\u003c/strong>: The outcome of a procedure may have less to do with the surgeon and more to do with the hospital system in which they work (which includes the pharmacists, nurses and hospital leadership.) Moreover, a bad outcome may be a result of a patient failing to take their medication due to a lack of support or a psychiatric condition.\u003c/li>\n\u003cli>\u003cstrong>Some surgeons take on risky cases\u003c/strong>: The data may be skewed against surgeons who take on tricky cases, which are more likely to lead to bad outcomes. It requires a lot of data about a particular case to make sense of the ultimate outcome.\u003c/li>\n\u003cli>\u003cstrong>Some surgeons work at hospitals that care for the very sick and the very poor: \u003c/strong>Some hospitals are regularly referred patients that no others will take. Some patients may also lack social services after they've been discharged, and are more likely to be readmitted.\u003c/li>\n\u003cli>\u003cstrong>Some surgeons have a conservative practice style:\u003c/strong> They may readmit patients more regularly just to monitor them. Although, it may be possible to screen for this by checking the length of the hospital stay.\u003c/li>\n\u003c/ul>\n\u003cp>The team at ProPublica did acknowledge these points and said they took pains to mitigate them in the following ways:\u003c/p>\n\u003cul>\n\u003cli>They did not list complications when they spotted patients who \"looked unusual in some way.\" They also scanned patient records for evidence of comorbidities, like obesity and diabetes -- and did not include these patients in the database.\u003c/li>\n\u003cli>They factored the \"hospital effect\" into the model, meaning that if a hospital is known to release patients without thorough discharge instructions, it may not be the surgeon's fault.\u003c/li>\n\u003cli>They examined the number of days when a patient was readmitted. If the bulk of those stays were three days or longer, that suggested a deeper complication, rather than a conservative approach.\u003c/li>\n\u003cli>They factored into their model the socio-economic status of patients, using \u003ca href=\"http://www.cms.gov/Medicare/Medicare-Fee-for-Service-Payment/InpatientRehabFacPPS/SSIData.html\">SSI data\u003c/a>. There are still be some gaps in this data, however, like the patient's mental state.\u003c/li>\n\u003c/ul>\n\u003cp>The reporters approached the project with the philosophy that surgeons' actions have a major effect on patient outcomes -- and therefore the good and bad actors should be called out. They reference the American College of Surgeons' statement of principles, saying surgeons are responsible for a patient’s entire course of care.\u003c/p>\n\u003cp>\"I will say that surgeons may not be directly responsible, but they do have a lot of power to address these things,\" Pierce said.\u003c/p>\n\u003cp>\u003cstrong>Other Limitations and Concerns\u003c/strong>\u003c/p>\n\u003cp>The most notable hole in ProPublica's data is that they only include Medicare patients. Another important limitation is their reliance on procedure codes. There is a great deal of variation in how hospitals code, \u003ca href=\"http://medicaleconomics.modernmedicine.com/medical-economics/content/tags/centers-medicare-and-medicaid-services/medicare-billing-problems-codi?page=full\">including some that even coded the wrong surgery. \u003c/a>\u003c/p>\n\u003cfigure id=\"attachment_13693\" class=\"wp-caption alignright\" style=\"max-width: 640px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/propublica2.jpg\">\u003cimg class=\"size-full wp-image-13693\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/propublica2.jpg\" alt=\"The reporting team at ProPublica's headquarters in New York City. \" width=\"640\" height=\"480\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/propublica2.jpg 640w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/propublica2-400x300.jpg 400w\" sizes=\"(max-width: 640px) 100vw, 640px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">The reporting team at ProPublica's headquarters in New York City. \u003ccite>(ProPublica )\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>As Wachter points out, another limitation is that some complications do not lead to readmission or death, and therefore may not be included in the Surgeon Scorecard.\u003c/p>\n\u003cp>Another widely-held concern among doctors and patient advocates is that some physicians may view the Surgeon Scorecard as a benchmark -- if it continues to be popular -- and will opt against taking on tricky cases.\u003c/p>\n\u003cp>\"It's possible that surgeons get frustrated and don't want to stick their neck out in the future,\" said Julia Hallisy, a San Francisco-based patient advocate.\u003c/p>\n\u003cp>\u003cstrong>Next Steps\u003c/strong>\u003c/p>\n\u003cp>Limitations aside, it's important to note that a project like this one would not have been possible a decade ago when hospitals across the country were still relying on paper records. With health systems slowly digitizing, such transparency projects that include thousands, if not millions, of data-sets are now feasible.\u003c/p>\n\u003cp>ProPublica is currently negotiating with states to release similar data, which would include all payers. Currently, it's difficult to follow a specific patient across hospital visits when they have different insurers.\u003c/p>\n\u003cp>In coming months, the team plans to update the data-set with more recent complication rates, and make changes based on the initial feedback and concerns. They're eager to hear from you.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Have you used the Surgeon Scorecard? Got any concerns to share? Contact the team on Twitter using the hashtag #surgeonscorecard.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/13651/what-you-need-to-know-about-the-new-surgeon-scorecard-app","authors":["3252"],"categories":["futureofyou_1060"],"tags":["futureofyou_469","futureofyou_453","futureofyou_270","futureofyou_80","futureofyou_523","futureofyou_524"],"featImg":"futureofyou_13690","label":"futureofyou"},"futureofyou_10817":{"type":"posts","id":"futureofyou_10817","meta":{"index":"posts_1591205157","site":"futureofyou","id":"10817","score":null,"sort":[1436290815000]},"guestAuthors":[],"slug":"ibm-hopes-its-watson-supercomputer-can-improve-americas-health","title":"Forget Winning 'Jeopardy,' IBM's Watson Aimed at Transforming Health Care","publishDate":1436290815,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>IBM has bigger plans for its Watson supercomputer than \u003ca href=\"http://www.nytimes.com/2011/02/17/science/17jeopardy-watson.html?pagewanted=all\">destroying its human competition on Jeopardy\u003c/a>.\u003c/p>\n\u003cp>In 2011, with its well-publicized Jeopardy win, IBM showed off Watson's ability to ingest a vast amount of information, and to answer sophisticated questions posed by humans. Since then, the company has been working behind-the-scenes to push Watson into the nation's largest industry sector: Health care.\u003c/p>\n\u003cp>The applications for health care are wide-ranging and diverse. Oncologists at top hospitals are experimenting with using Watson to pull up relevant clinical trials and medical research while treating cancer patients. Other health institutions are analyzing a vast pool of patient data from various sources -- and directing resources to those who are most likely to get sick. The company recently announced a \u003ca href=\"http://identify%20subtle%20signals%20of%20disease%20progression\">partnership with drugstore chain CVS\u003c/a> to reason through 70 million people's health records and identify the subtle signals of disease progression.\u003c/p>\n\u003cp>In June, we broke the news about IBM's latest health care collaboration. The company is working with a nonprofit called \u003ca href=\"http://www.hiccup.co/\">Way to Wellville,\u003c/a> which is on a mission to transform a community’s health status in five places across the country, in just five years.\u003c/p>\n\u003cp>Improving health outcomes for thousands of people is one of Watson's most ambitious projects yet. \u003cem>KQED\u003c/em> spoke with IBM executives and data scientists to determine if Watson is up for the task.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>From Jeopardy to Public Health \u003c/strong>\u003c/p>\n\u003cp>A few years ago, IBM's Steve Gold had a fateful encounter with Esther Dyson, a prominent technology and health investor who has backed startups like \u003ca href=\"23andme.com\">23andMe\u003c/a>.\u003c/p>\n\u003cp>\"She [Dyson] had a noble thought. I got to thinking about how we could help,\" said Gold, who works on the Watson team as a chief marketing officer.\u003c/p>\n\u003cp>That noble thought involved using technology to improve community health. Dyson and the team behind the Way to Wellville project, as it would later be known, opted to work with five communities across the U.S.: Lake County, California; Spartanburg, South Carolina; Niagara Falls, New York; Clatsop County, Oregon; and Greater Muskegon, Michigan.\u003c/p>\n\u003cp>Many of these communities are \"high poverty hotspots,\" meaning they have high concentrations of residents under the poverty line. Across the board, these communities struggle with keeping their citizens healthy and managing ever-rising health care costs.\u003c/p>\n\u003cp>[\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/07/06/can-a-startup-transform-health-care-in-californias-lake-county/\">Related: Can a Startup Transform Health Care in California's Lake County?\u003c/a>]\u003c/p>\n\u003cfigure id=\"attachment_11146\" class=\"wp-caption alignright\" style=\"max-width: 349px\">\u003cimg class=\" wp-image-11146\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Unknown-1-750x600.jpeg\" alt=\"Toshio Mii, IBM Watson's director of partnerships, addresses the citizens of Lake County \" width=\"349\" height=\"279\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-750x600.jpeg 750w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-400x320.jpeg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-1180x944.jpeg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-960x768.jpeg 960w\" sizes=\"(max-width: 349px) 100vw, 349px\">\u003cfigcaption class=\"wp-caption-text\">Toshio Mii, IBM Watson's director of partnerships, addresses the citizens of Lake County \u003ccite>(Nathan DeHart)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The IBM Watson team formally agreed to join up with Dyson in January of 2015. At that time, major research and teaching hospitals like \u003ca href=\"http://www.mdanderson.org/newsroom/news-releases/2013/ibm-watson-to-power-moon-shots-.html\">MD Anderson in Texas and the Mayo Clinic were in the midst of trials \u003c/a>with Watson to gauge its value for doctors.\u003c/p>\n\u003cp>Health experts say that the industry desperately needs user-friendly tools to parse through a massive amount of data, which is often scattered among many different systems. \"The problem of how to make health data meaningful is a very large one,\" said Ash Damle, a data scientist and the chief executive of Lumiata, a company that specializes in analyzing health data.\u003c/p>\n\u003cp>Hospitals and health clinics store a vast amount of data from doctors' notes, patient medical records, research papers and academic journals. It's a virtually impossible task for the human brain to search through this data and dig up the most relevant information for a patient -- but a computing system like Watson may be able to do it.\u003c/p>\n\u003cp>In addition, IBM spent many years pumping Watson full of medical knowledge. By 2013, Watson had analyzed 605,000 pieces of medical evidence, two million pages of text, 25,000 training cases and had the assist of 14,700 clinician hours fine-tuning its decision accuracy,\" Forbes \u003ca href=\"http://www.forbes.com/sites/bruceupbin/2013/02/08/ibms-watson-gets-its-first-piece-of-business-in-healthcare/\" target=\"_blank\">reported.\u003c/a> Much of this data is \"unstructured,\" meaning it is text or video-based and can't be easily stored in a database like Microsoft Excel.\u003c/p>\n\u003cp>\u003cstrong>The Best AI for the Task?\u003c/strong>\u003c/p>\n\u003cp>Still, machine learning experts say that they aren't yet convinced that Watson is the best option for all health providers -- particularly those who lack ample resources.\u003c/p>\n\u003cp>According to Damle, the Lumiata CEO, health organizations need to invest in training for their employees to use Watson for the long-haul, as this kind of technology gets smarter over time. For those who can't afford IBM's consulting fees, this may prove to be an ongoing challenge.\u003c/p>\n\u003cp>Moreover, many Silicon Valley startups are building more affordable \"open source\" alternatives. Data scientists can view the computer code under the hood, and tweak it if necessary.\u003c/p>\n\u003cp>\"IBM is taking a different tack: A more business-focused, closed approach,\" said Anthony Goldbloom, chief executive of Kaggle, a company that hosts data prediction competitions and works with hundreds of data scientists. Goldbloom added Watson's Jeopardy win was an \"unbelievable achievement\" but it's not yet clear whether Watson is the easiest-to-use \"general-purpose\" tool for health care applications.\u003c/p>\n\u003cp>Others take a more skeptical view.\u003c/p>\n\u003cp>\"The IBM approach is to claim to solve every problem and scramble to write custom code where their core capabilities are lacking,\" said Matt Ocko, a venture capitalist at \u003ca href=\"http://dcvc.com/\">Data Collective\u003c/a>, who specializes in data science and machine learning.\u003c/p>\n\u003cp>\"But there may be a lot of startups with better machine learning technology, which take a more specialized approach, ready to solve problems where IBM is behind,\" he said.\u003c/p>\n\u003cp>\u003cstrong>First Steps \u003c/strong>\u003c/p>\n\u003cp>IBM has agreed to work with the Way to Wellville team for five years, lending both its technology and talent.\u003c/p>\n\u003cp>IBM's Gold sees potential for the team to experiment with the new digital health technologies during this period. Watson will ingest data from the latest wearable devices, such as the Fitbit, the iPhone or the Apple Watch, so the community can monitor individuals' exercise levels.\u003c/p>\n\u003cp>\"You could imagine putting a wearable device on a fifth-grader to track their movement,\" said Gold. \"You'd need a good way to merge all this data into the cloud and draw some meaningful conclusions -- and that's where Watson can help.\"\u003c/p>\n\u003cp>IBM's partnerships director Toshio Mii recently flew to Spartanburg, South Carolina to meet with community health officials. Spartanburg is focusing its energies on combating childhood obesity.\u003c/p>\n\u003cp>It's still early days for the project, but Mii said the IBM Watson team is brimming with ideas. He has high hopes for wearable-technology and is currently evaluating trackers from companies that focus on kids, like \u003ca href=\"https://www.sqord.com/\">Sqord\u003c/a>. The community will pay for and distribute the trackers, Mii said.\u003c/p>\n\u003cp>According to Mii, Spartanburg is also exploring ways to improve the quality and nutritional value of school meals, as well as the access to green spaces.\u003c/p>\n\u003cp>Finally, the community will use messaging tools to help uninsured families in Spartanburg access information about improving health and tackling obesity. The community will also use this technology to remind patients to keep their doctors' appointments.\u003c/p>\n\u003cp>If any of these projects prove successful, IBM will help gather up some of the data and present it to policymakers and community health researchers.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"The goal is to replicate some of these projects elsewhere,\" said Mii. \"We want the positive results to proliferate.\"\u003c/p>\n\n","blocks":[],"excerpt":"Improving health outcomes for thousands of people is one of Watson's most ambitious projects yet. ","status":"publish","parent":0,"modified":1438805682,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":35,"wordCount":1266},"headData":{"title":"Forget Winning 'Jeopardy,' IBM's Watson Aimed at Transforming Health Care | KQED","description":"Improving health outcomes for thousands of people is one of Watson's most ambitious projects yet. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"10817 http://ww2.kqed.org/futureofyou/?p=10817","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/07/07/ibm-hopes-its-watson-supercomputer-can-improve-americas-health/","disqusTitle":"Forget Winning 'Jeopardy,' IBM's Watson Aimed at Transforming Health Care","path":"/futureofyou/10817/ibm-hopes-its-watson-supercomputer-can-improve-americas-health","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>IBM has bigger plans for its Watson supercomputer than \u003ca href=\"http://www.nytimes.com/2011/02/17/science/17jeopardy-watson.html?pagewanted=all\">destroying its human competition on Jeopardy\u003c/a>.\u003c/p>\n\u003cp>In 2011, with its well-publicized Jeopardy win, IBM showed off Watson's ability to ingest a vast amount of information, and to answer sophisticated questions posed by humans. Since then, the company has been working behind-the-scenes to push Watson into the nation's largest industry sector: Health care.\u003c/p>\n\u003cp>The applications for health care are wide-ranging and diverse. Oncologists at top hospitals are experimenting with using Watson to pull up relevant clinical trials and medical research while treating cancer patients. Other health institutions are analyzing a vast pool of patient data from various sources -- and directing resources to those who are most likely to get sick. The company recently announced a \u003ca href=\"http://identify%20subtle%20signals%20of%20disease%20progression\">partnership with drugstore chain CVS\u003c/a> to reason through 70 million people's health records and identify the subtle signals of disease progression.\u003c/p>\n\u003cp>In June, we broke the news about IBM's latest health care collaboration. The company is working with a nonprofit called \u003ca href=\"http://www.hiccup.co/\">Way to Wellville,\u003c/a> which is on a mission to transform a community’s health status in five places across the country, in just five years.\u003c/p>\n\u003cp>Improving health outcomes for thousands of people is one of Watson's most ambitious projects yet. \u003cem>KQED\u003c/em> spoke with IBM executives and data scientists to determine if Watson is up for the task.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cstrong>From Jeopardy to Public Health \u003c/strong>\u003c/p>\n\u003cp>A few years ago, IBM's Steve Gold had a fateful encounter with Esther Dyson, a prominent technology and health investor who has backed startups like \u003ca href=\"23andme.com\">23andMe\u003c/a>.\u003c/p>\n\u003cp>\"She [Dyson] had a noble thought. I got to thinking about how we could help,\" said Gold, who works on the Watson team as a chief marketing officer.\u003c/p>\n\u003cp>That noble thought involved using technology to improve community health. Dyson and the team behind the Way to Wellville project, as it would later be known, opted to work with five communities across the U.S.: Lake County, California; Spartanburg, South Carolina; Niagara Falls, New York; Clatsop County, Oregon; and Greater Muskegon, Michigan.\u003c/p>\n\u003cp>Many of these communities are \"high poverty hotspots,\" meaning they have high concentrations of residents under the poverty line. Across the board, these communities struggle with keeping their citizens healthy and managing ever-rising health care costs.\u003c/p>\n\u003cp>[\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/07/06/can-a-startup-transform-health-care-in-californias-lake-county/\">Related: Can a Startup Transform Health Care in California's Lake County?\u003c/a>]\u003c/p>\n\u003cfigure id=\"attachment_11146\" class=\"wp-caption alignright\" style=\"max-width: 349px\">\u003cimg class=\" wp-image-11146\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/07/Unknown-1-750x600.jpeg\" alt=\"Toshio Mii, IBM Watson's director of partnerships, addresses the citizens of Lake County \" width=\"349\" height=\"279\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-750x600.jpeg 750w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-400x320.jpeg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-1180x944.jpeg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/07/Unknown-1-960x768.jpeg 960w\" sizes=\"(max-width: 349px) 100vw, 349px\">\u003cfigcaption class=\"wp-caption-text\">Toshio Mii, IBM Watson's director of partnerships, addresses the citizens of Lake County \u003ccite>(Nathan DeHart)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The IBM Watson team formally agreed to join up with Dyson in January of 2015. At that time, major research and teaching hospitals like \u003ca href=\"http://www.mdanderson.org/newsroom/news-releases/2013/ibm-watson-to-power-moon-shots-.html\">MD Anderson in Texas and the Mayo Clinic were in the midst of trials \u003c/a>with Watson to gauge its value for doctors.\u003c/p>\n\u003cp>Health experts say that the industry desperately needs user-friendly tools to parse through a massive amount of data, which is often scattered among many different systems. \"The problem of how to make health data meaningful is a very large one,\" said Ash Damle, a data scientist and the chief executive of Lumiata, a company that specializes in analyzing health data.\u003c/p>\n\u003cp>Hospitals and health clinics store a vast amount of data from doctors' notes, patient medical records, research papers and academic journals. It's a virtually impossible task for the human brain to search through this data and dig up the most relevant information for a patient -- but a computing system like Watson may be able to do it.\u003c/p>\n\u003cp>In addition, IBM spent many years pumping Watson full of medical knowledge. By 2013, Watson had analyzed 605,000 pieces of medical evidence, two million pages of text, 25,000 training cases and had the assist of 14,700 clinician hours fine-tuning its decision accuracy,\" Forbes \u003ca href=\"http://www.forbes.com/sites/bruceupbin/2013/02/08/ibms-watson-gets-its-first-piece-of-business-in-healthcare/\" target=\"_blank\">reported.\u003c/a> Much of this data is \"unstructured,\" meaning it is text or video-based and can't be easily stored in a database like Microsoft Excel.\u003c/p>\n\u003cp>\u003cstrong>The Best AI for the Task?\u003c/strong>\u003c/p>\n\u003cp>Still, machine learning experts say that they aren't yet convinced that Watson is the best option for all health providers -- particularly those who lack ample resources.\u003c/p>\n\u003cp>According to Damle, the Lumiata CEO, health organizations need to invest in training for their employees to use Watson for the long-haul, as this kind of technology gets smarter over time. For those who can't afford IBM's consulting fees, this may prove to be an ongoing challenge.\u003c/p>\n\u003cp>Moreover, many Silicon Valley startups are building more affordable \"open source\" alternatives. Data scientists can view the computer code under the hood, and tweak it if necessary.\u003c/p>\n\u003cp>\"IBM is taking a different tack: A more business-focused, closed approach,\" said Anthony Goldbloom, chief executive of Kaggle, a company that hosts data prediction competitions and works with hundreds of data scientists. Goldbloom added Watson's Jeopardy win was an \"unbelievable achievement\" but it's not yet clear whether Watson is the easiest-to-use \"general-purpose\" tool for health care applications.\u003c/p>\n\u003cp>Others take a more skeptical view.\u003c/p>\n\u003cp>\"The IBM approach is to claim to solve every problem and scramble to write custom code where their core capabilities are lacking,\" said Matt Ocko, a venture capitalist at \u003ca href=\"http://dcvc.com/\">Data Collective\u003c/a>, who specializes in data science and machine learning.\u003c/p>\n\u003cp>\"But there may be a lot of startups with better machine learning technology, which take a more specialized approach, ready to solve problems where IBM is behind,\" he said.\u003c/p>\n\u003cp>\u003cstrong>First Steps \u003c/strong>\u003c/p>\n\u003cp>IBM has agreed to work with the Way to Wellville team for five years, lending both its technology and talent.\u003c/p>\n\u003cp>IBM's Gold sees potential for the team to experiment with the new digital health technologies during this period. Watson will ingest data from the latest wearable devices, such as the Fitbit, the iPhone or the Apple Watch, so the community can monitor individuals' exercise levels.\u003c/p>\n\u003cp>\"You could imagine putting a wearable device on a fifth-grader to track their movement,\" said Gold. \"You'd need a good way to merge all this data into the cloud and draw some meaningful conclusions -- and that's where Watson can help.\"\u003c/p>\n\u003cp>IBM's partnerships director Toshio Mii recently flew to Spartanburg, South Carolina to meet with community health officials. Spartanburg is focusing its energies on combating childhood obesity.\u003c/p>\n\u003cp>It's still early days for the project, but Mii said the IBM Watson team is brimming with ideas. He has high hopes for wearable-technology and is currently evaluating trackers from companies that focus on kids, like \u003ca href=\"https://www.sqord.com/\">Sqord\u003c/a>. The community will pay for and distribute the trackers, Mii said.\u003c/p>\n\u003cp>According to Mii, Spartanburg is also exploring ways to improve the quality and nutritional value of school meals, as well as the access to green spaces.\u003c/p>\n\u003cp>Finally, the community will use messaging tools to help uninsured families in Spartanburg access information about improving health and tackling obesity. The community will also use this technology to remind patients to keep their doctors' appointments.\u003c/p>\n\u003cp>If any of these projects prove successful, IBM will help gather up some of the data and present it to policymakers and community health researchers.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"The goal is to replicate some of these projects elsewhere,\" said Mii. \"We want the positive results to proliferate.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/10817/ibm-hopes-its-watson-supercomputer-can-improve-americas-health","authors":["3252"],"categories":["futureofyou_1"],"tags":["futureofyou_501","futureofyou_138","futureofyou_469","futureofyou_453","futureofyou_499","futureofyou_502","futureofyou_270","futureofyou_80","futureofyou_503","futureofyou_500","futureofyou_498"],"featImg":"futureofyou_11147","label":"futureofyou"},"futureofyou_7146":{"type":"posts","id":"futureofyou_7146","meta":{"index":"posts_1591205157","site":"futureofyou","id":"7146","score":null,"sort":[1435683491000]},"guestAuthors":[],"slug":"this-smart-pen-could-revolutionize-diabetes-treatment","title":"This 'Smart Pen' Could Revolutionize Diabetes Treatment","publishDate":1435683491,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Diabetes runs in Amay Bandodkar’s family. He remembers watching his grandmother, who suffered from Type 2 diabetes, draw blood from her finger every few hours for glucose tests. The process got harder as she grew older, and in her final years Bandodkar says it hurt to watch.\u003c/p>\n\u003cp>“She was really skinny, and sometimes she would have to prick over and over to find a vein,” he recalls. “I could see the pain she was in.”\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">Now a graduate student in the engineering department at \u003ca href=\"https://ucsd.edu/\">\u003cspan class=\"s2\">UC San Diego\u003c/span>\u003c/a>, Bandodkar and his adviser, Professor Joseph Wang, have developed products that could have spared her pain: \u003c/span>\u003cspan class=\"s3\">glucose sensors that are cheap, non-invasive, and renewable, applied using a regular ballpoint pen or stuck on like a temporary tattoo.\u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">These new sensors make testing blood sugar as easy as signing your name, and \u003c/span>\u003cspan class=\"s2\">have\u003c/span>\u003cspan class=\"s1\"> the potential to revolutionize a multibillion dollar industry. \u003c/span>\u003c/p>\n\u003cp>\u003cstrong>The Glucose Gold Rush\u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_8616\" class=\"wp-caption alignright\" style=\"max-width: 290px\">\u003cimg class=\" wp-image-8616\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/06/Glucose-1-400x600.jpg\" alt=\"The renewable glucose sensor that looks like a temporary tattoo, and is just as easy to apply and remove\" width=\"290\" height=\"435\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/06/Glucose-1-400x600.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Glucose-1.jpg 600w\" sizes=\"(max-width: 290px) 100vw, 290px\">\u003cfigcaption class=\"wp-caption-text\">The renewable glucose sensor that looks like a temporary tattoo, and is just as easy to apply and remove \u003ccite>(Amay Bandodkar)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The glucose self-monitoring industry has exploded as Type 2 diabetes proliferated over the past thirty years. Diabetes diagnoses \u003ca href=\"http://www.cdc.gov/diabetes/statistics/prev/national/figage.htm\">doubled between 1980 and 2011\u003c/a>\u003ca href=\"#_ftn1\" name=\"_ftnref1\">\u003c/a>, while sales of glucose monitoring products grew by over 12 percent annually from 1994 to 2006. Today, the industry is \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769893/\">worth over $8 billion\u003c/a>\u003ca href=\"#_ftn2\" name=\"_ftnref2\">. \u003c/a>\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The disease isn’t going anywhere — \u003ca href=\"http://www.cdc.gov/diabetes/data/statistics/2014statisticsreport.html\">one in eleven Americans has it\u003c/a>, and the Centers for Disease Control and Prevention projects this number will climb to \u003ca href=\"http://www.cdc.gov/media/pressrel/2010/r101022.html\">one in three by 2050\u003c/a>\u003ca href=\"#_ftn4\" name=\"_ftnref4\"> \u003c/a>— as a result of poor nutrition and a lack of exercise.\u003c/p>\n\u003cp>“The worst thing about diabetes is that it has no cure,” Bandodkar says. “You can only manage it.” But for patients, keeping a close eye on blood sugar levels is key.\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/05/12/everyone-should-track-their-blood-sugar-not-just-people-with-diabetes-like-me/\">\u003cem>[Related: Everyone Should Track Their Blood Sugar -- Not Just People With Diabetes Like Me]\u003c/em>\u003c/a>\u003c/p>\n\u003cp>Type II diabetics are encouraged to test their glucose levels regularly, as often as every few hours, like Bandodkar’s grandmother had to.\u003c/p>\n\u003cp>The standard tool for these tests is a disposable sensor strip. The strips are plated with gold film, can only be used once, and \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/22235952\">cost about a dollar each\u003c/a>. Surveys of patients with diabetes have shown that the cost of the strips, and the inconvenience of replacing them, is a \u003ca href=\"http://www.sciencedirect.com/science/article/pii/S1499267110410084;%20http://care.diabetesjournals.org/content/26/8/2294.short\">significant barrier to responsible monitoring\u003c/a>\u003ca href=\"#_ftn6\" name=\"_ftnref6\">.\u003c/a>\u003c/p>\n\u003cp>“You have to throw [the strips] away,” Bandodkar says. “If we could make a reusable sensor that would be one way to reduce the cost.”\u003c/p>\n\u003cp>So, he and Wang set out to find a renewable sensor. The bio-catalytic enzymatic roller pens they came up with (“biocatalytic pens” for short) could be the next generation of glucose testing for the masses: reusable, customizable, and cheap.\u003c/p>\n\u003cp>\u003cstrong>Smart Ink\u003c/strong>\u003c/p>\n\u003cp>The biocatalytic pen uses ink with glucose-oxidase, an enzyme that reacts selectively with glucose.\u003c/p>\n\u003caside class=\"pullquote alignright\">““The worst thing about diabetes is that it has no cure. You can only manage it.\"\u003cbr>\n\u003ccite>Amay Bandodkar, a graduate student at UC San Diego\u003cbr>\n\u003c/cite>\u003c/aside>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">A sensor can be applied right onto a patient’s skin using a temporary tattoo, and the glucose oxidase will react with glucose just under their skin\u003c/span>\u003cspan class=\"s2\">. The reaction generates an electric current that a chip, stuck onto their skin, reads and transmits to a laptop via Bluetooth. \u003c/span>\u003cspan class=\"s1\">Or, a pen can be used to draw a renewable sensor onto an electrode. In this case the patient would still supply a drop of blood for testing on the electrode.\u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">One pen can generate 500 sensors, and the accuracy of the glucose measurements in the \u003c/span>\u003cspan class=\"s2\">pen and tattoo methods \u003c/span>\u003cspan class=\"s1\">are already comparable to the glucose strips in use today.\u003c/span>\u003c/p>\n\u003cp class=\"p1\">There are still some challenges to overcome, mostly in the stability and storage of the ink (which so far only keeps for three weeks in an extra-cold refrigerator), but Bandodkar will begin working with doctors in the next few months on a large-scale human trial.\u003c/p>\n\u003cp>He’s not the only one looking to shake up the glucose monitoring status quo.\u003c/p>\n\u003cp>\u003ca href=\"http://www.dexcom.com/\">Dexcom\u003c/a>, also based in San Diego, has a system using a tiny wire inserted under a patient’s skin that make continuous glucose measurements. Google is even getting in on the game, with a\u003ca href=\"http://www.technologyreview.com/news/529196/what-else-could-smart-contact-lenses-do/\"> smart contact lens\u003c/a> it’s developing with pharma giant Novartis that would take and transmit continuous glucose measurements.\u003c/p>\n\u003cp>But the comparatively low-tech pens and tattoos are much cheaper than these methods, which Bandodkar hopes will help make life easier for diabetes patients who now rely on glucose testing strips.\u003c/p>\n\u003cp>The bio-ink technology also has a host of other applications, because ink could be made for almost any chemical that reacts with an enzyme, and drawn on any surface. Bandodkar and Wang have formulated an ink to measure levels of common air pollutants that can be drawn onto tree leaves, or other natural surfaces, to cheaply monitor local pollution.\u003c/p>\n\u003cp>The sneakiness of a sensor hidden in a ballpoint pen also has military utility.\u003c/p>\n\u003cp>“For defense, you wouldn’t want your enemy to know you [deployed] a chemical sensor,” Bandodkar says. An armed person could take the pen and draw a sensor onto any surface to stealthily detect chemical weapons.\u003c/p>\n\u003cp>\u003cstrong>Some Science is Personal\u003c/strong>\u003c/p>\n\u003cp>But among all the exciting applications of the pens, glucose-sensing remains Bandodkar’s priority, and not for the potential commercial gains. His grandmother wasn’t the only one in his family to suffer from diabetes: his mom also suffers from Type 2 diabetes.\u003c/p>\n\u003cp>“When I told my mom I was working on this, she was so happy,” he says. The potential to help her and millions of others keeps him motivated, but he doesn’t let personal investment cloud his scientific rigor.\u003c/p>\n\u003cp>“You have your emotional attachment, and on the other side you have your scientific yes or no, is it working or not,” he says.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>So far, the answer seems to be a definitive ‘yes.’ More work needs to be done, but glucose-sensing pens may be only two or three years away from commercial availability. It’s too late to help Bandodkar’s grandmother, who passed away several years ago, but he can still help his mother — \u003ca href=\"https://www.idf.org/worlddiabetesday/toolkit/gp/facts-figures\">and 400 million others \u003c/a>\u003ca href=\"#_ftn7\" name=\"_ftnref7\">\u003c/a>— save their blood and money.\u003c/p>\n\n","blocks":[],"excerpt":"Graduate students at UC San Diego developed a 'bio ink-pen,' which makes testing blood sugar as easy as signing your name. ","status":"publish","parent":0,"modified":1477281281,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":26,"wordCount":1079},"headData":{"title":"This 'Smart Pen' Could Revolutionize Diabetes Treatment | KQED","description":"Graduate students at UC San Diego developed a 'bio ink-pen,' which makes testing blood sugar as easy as signing your name. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"7146 http://ww2.kqed.org/futureofyou/?p=7146","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/06/30/this-smart-pen-could-revolutionize-diabetes-treatment/","disqusTitle":"This 'Smart Pen' Could Revolutionize Diabetes Treatment","path":"/futureofyou/7146/this-smart-pen-could-revolutionize-diabetes-treatment","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Diabetes runs in Amay Bandodkar’s family. He remembers watching his grandmother, who suffered from Type 2 diabetes, draw blood from her finger every few hours for glucose tests. The process got harder as she grew older, and in her final years Bandodkar says it hurt to watch.\u003c/p>\n\u003cp>“She was really skinny, and sometimes she would have to prick over and over to find a vein,” he recalls. “I could see the pain she was in.”\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">Now a graduate student in the engineering department at \u003ca href=\"https://ucsd.edu/\">\u003cspan class=\"s2\">UC San Diego\u003c/span>\u003c/a>, Bandodkar and his adviser, Professor Joseph Wang, have developed products that could have spared her pain: \u003c/span>\u003cspan class=\"s3\">glucose sensors that are cheap, non-invasive, and renewable, applied using a regular ballpoint pen or stuck on like a temporary tattoo.\u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">These new sensors make testing blood sugar as easy as signing your name, and \u003c/span>\u003cspan class=\"s2\">have\u003c/span>\u003cspan class=\"s1\"> the potential to revolutionize a multibillion dollar industry. \u003c/span>\u003c/p>\n\u003cp>\u003cstrong>The Glucose Gold Rush\u003c/strong>\u003c/p>\n\u003cfigure id=\"attachment_8616\" class=\"wp-caption alignright\" style=\"max-width: 290px\">\u003cimg class=\" wp-image-8616\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/06/Glucose-1-400x600.jpg\" alt=\"The renewable glucose sensor that looks like a temporary tattoo, and is just as easy to apply and remove\" width=\"290\" height=\"435\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/06/Glucose-1-400x600.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Glucose-1.jpg 600w\" sizes=\"(max-width: 290px) 100vw, 290px\">\u003cfigcaption class=\"wp-caption-text\">The renewable glucose sensor that looks like a temporary tattoo, and is just as easy to apply and remove \u003ccite>(Amay Bandodkar)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The glucose self-monitoring industry has exploded as Type 2 diabetes proliferated over the past thirty years. Diabetes diagnoses \u003ca href=\"http://www.cdc.gov/diabetes/statistics/prev/national/figage.htm\">doubled between 1980 and 2011\u003c/a>\u003ca href=\"#_ftn1\" name=\"_ftnref1\">\u003c/a>, while sales of glucose monitoring products grew by over 12 percent annually from 1994 to 2006. Today, the industry is \u003ca href=\"http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769893/\">worth over $8 billion\u003c/a>\u003ca href=\"#_ftn2\" name=\"_ftnref2\">. \u003c/a>\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>The disease isn’t going anywhere — \u003ca href=\"http://www.cdc.gov/diabetes/data/statistics/2014statisticsreport.html\">one in eleven Americans has it\u003c/a>, and the Centers for Disease Control and Prevention projects this number will climb to \u003ca href=\"http://www.cdc.gov/media/pressrel/2010/r101022.html\">one in three by 2050\u003c/a>\u003ca href=\"#_ftn4\" name=\"_ftnref4\"> \u003c/a>— as a result of poor nutrition and a lack of exercise.\u003c/p>\n\u003cp>“The worst thing about diabetes is that it has no cure,” Bandodkar says. “You can only manage it.” But for patients, keeping a close eye on blood sugar levels is key.\u003c/p>\n\u003cp>\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/05/12/everyone-should-track-their-blood-sugar-not-just-people-with-diabetes-like-me/\">\u003cem>[Related: Everyone Should Track Their Blood Sugar -- Not Just People With Diabetes Like Me]\u003c/em>\u003c/a>\u003c/p>\n\u003cp>Type II diabetics are encouraged to test their glucose levels regularly, as often as every few hours, like Bandodkar’s grandmother had to.\u003c/p>\n\u003cp>The standard tool for these tests is a disposable sensor strip. The strips are plated with gold film, can only be used once, and \u003ca href=\"http://www.ncbi.nlm.nih.gov/pubmed/22235952\">cost about a dollar each\u003c/a>. Surveys of patients with diabetes have shown that the cost of the strips, and the inconvenience of replacing them, is a \u003ca href=\"http://www.sciencedirect.com/science/article/pii/S1499267110410084;%20http://care.diabetesjournals.org/content/26/8/2294.short\">significant barrier to responsible monitoring\u003c/a>\u003ca href=\"#_ftn6\" name=\"_ftnref6\">.\u003c/a>\u003c/p>\n\u003cp>“You have to throw [the strips] away,” Bandodkar says. “If we could make a reusable sensor that would be one way to reduce the cost.”\u003c/p>\n\u003cp>So, he and Wang set out to find a renewable sensor. The bio-catalytic enzymatic roller pens they came up with (“biocatalytic pens” for short) could be the next generation of glucose testing for the masses: reusable, customizable, and cheap.\u003c/p>\n\u003cp>\u003cstrong>Smart Ink\u003c/strong>\u003c/p>\n\u003cp>The biocatalytic pen uses ink with glucose-oxidase, an enzyme that reacts selectively with glucose.\u003c/p>\n\u003caside class=\"pullquote alignright\">““The worst thing about diabetes is that it has no cure. You can only manage it.\"\u003cbr>\n\u003ccite>Amay Bandodkar, a graduate student at UC San Diego\u003cbr>\n\u003c/cite>\u003c/aside>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">A sensor can be applied right onto a patient’s skin using a temporary tattoo, and the glucose oxidase will react with glucose just under their skin\u003c/span>\u003cspan class=\"s2\">. The reaction generates an electric current that a chip, stuck onto their skin, reads and transmits to a laptop via Bluetooth. \u003c/span>\u003cspan class=\"s1\">Or, a pen can be used to draw a renewable sensor onto an electrode. In this case the patient would still supply a drop of blood for testing on the electrode.\u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">One pen can generate 500 sensors, and the accuracy of the glucose measurements in the \u003c/span>\u003cspan class=\"s2\">pen and tattoo methods \u003c/span>\u003cspan class=\"s1\">are already comparable to the glucose strips in use today.\u003c/span>\u003c/p>\n\u003cp class=\"p1\">There are still some challenges to overcome, mostly in the stability and storage of the ink (which so far only keeps for three weeks in an extra-cold refrigerator), but Bandodkar will begin working with doctors in the next few months on a large-scale human trial.\u003c/p>\n\u003cp>He’s not the only one looking to shake up the glucose monitoring status quo.\u003c/p>\n\u003cp>\u003ca href=\"http://www.dexcom.com/\">Dexcom\u003c/a>, also based in San Diego, has a system using a tiny wire inserted under a patient’s skin that make continuous glucose measurements. Google is even getting in on the game, with a\u003ca href=\"http://www.technologyreview.com/news/529196/what-else-could-smart-contact-lenses-do/\"> smart contact lens\u003c/a> it’s developing with pharma giant Novartis that would take and transmit continuous glucose measurements.\u003c/p>\n\u003cp>But the comparatively low-tech pens and tattoos are much cheaper than these methods, which Bandodkar hopes will help make life easier for diabetes patients who now rely on glucose testing strips.\u003c/p>\n\u003cp>The bio-ink technology also has a host of other applications, because ink could be made for almost any chemical that reacts with an enzyme, and drawn on any surface. Bandodkar and Wang have formulated an ink to measure levels of common air pollutants that can be drawn onto tree leaves, or other natural surfaces, to cheaply monitor local pollution.\u003c/p>\n\u003cp>The sneakiness of a sensor hidden in a ballpoint pen also has military utility.\u003c/p>\n\u003cp>“For defense, you wouldn’t want your enemy to know you [deployed] a chemical sensor,” Bandodkar says. An armed person could take the pen and draw a sensor onto any surface to stealthily detect chemical weapons.\u003c/p>\n\u003cp>\u003cstrong>Some Science is Personal\u003c/strong>\u003c/p>\n\u003cp>But among all the exciting applications of the pens, glucose-sensing remains Bandodkar’s priority, and not for the potential commercial gains. His grandmother wasn’t the only one in his family to suffer from diabetes: his mom also suffers from Type 2 diabetes.\u003c/p>\n\u003cp>“When I told my mom I was working on this, she was so happy,” he says. The potential to help her and millions of others keeps him motivated, but he doesn’t let personal investment cloud his scientific rigor.\u003c/p>\n\u003cp>“You have your emotional attachment, and on the other side you have your scientific yes or no, is it working or not,” he says.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>So far, the answer seems to be a definitive ‘yes.’ More work needs to be done, but glucose-sensing pens may be only two or three years away from commercial availability. It’s too late to help Bandodkar’s grandmother, who passed away several years ago, but he can still help his mother — \u003ca href=\"https://www.idf.org/worlddiabetesday/toolkit/gp/facts-figures\">and 400 million others \u003c/a>\u003ca href=\"#_ftn7\" name=\"_ftnref7\">\u003c/a>— save their blood and money.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/7146/this-smart-pen-could-revolutionize-diabetes-treatment","authors":["6616"],"categories":["futureofyou_1060","futureofyou_1062"],"tags":["futureofyou_138","futureofyou_477","futureofyou_128","futureofyou_453","futureofyou_80","futureofyou_480","futureofyou_479","futureofyou_478"],"featImg":"futureofyou_8615","label":"futureofyou"},"futureofyou_6154":{"type":"posts","id":"futureofyou_6154","meta":{"index":"posts_1591205157","site":"futureofyou","id":"6154","score":null,"sort":[1435170302000]},"guestAuthors":[],"slug":"google-and-broad-institute-team-up-to-bring-genomic-analysis-to-the-cloud","title":"Google and Broad Institute Team Up to Bring Genomic Analysis to the Cloud","publishDate":1435170302,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp class=\"p1\">\u003ca href=\"google.com\">Google\u003c/a> has teamed up with one of the world's top genomics centers, the \u003ca href=\"https://www.broadinstitute.org/\">Broad Institute of MIT\u003c/a> and Harvard, to work on a series of projects it claims will propel biomedical research.\u003c/p>\n\u003cp class=\"p1\">For the first joint project, engineers from both organizations will bring \"GATK,\" the Broad Institute's widely-used genome analysis toolkit, onto Google's cloud service and into the hands of researchers.\u003c/p>\n\u003cp class=\"p1\">\"The limiting factor is no longer getting the DNA sequenced,\" said Dr. Barry Starr, a Stanford geneticist and a contributor to KQED. \"It is now interpreting all of that information in a meaningful way.\"\u003c/p>\n\u003cp>The Broad Institute alone \u003ca href=\"http://www.technologyreview.com/news/532266/google-wants-to-store-your-genome/\">analyzed a massive 200 terabytes\u003c/a> of raw data in a single month. In the past decade, the institute has genotyped more than 1.4 million biological samples.\u003c/p>\n\u003cp>Google isn't the only tech company vying to use cloud-based technology to store and analyze this massive volume of genetic information. This is a point of competition between Google, IBM, Amazon, and Microsoft.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>But Google is now the only public cloud provider to offer the GATK toolkit as a service. By making the software available in the cloud, researchers can run it on large data-sets without access to local computing -- and that frees up both time and resources.\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">\"GATK was already available to researchers and tens of thousands have used the software to analyze their data,\" said Starr. \"Google adds the power of being able to handle much more data at a time.\"\u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">Google Genomics' product manager Jonathan Bingham told KQED two groups will benefit most from this partnership: small research groups who lack sophisticated computing, and any individual who wants to analyze large genomic data sets without needing to download them. \u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">“Broad Institute has got a tremendous amount of expertise working with large numbers of biological samples and huge volumes of genomic data,\" Bingham explained. \"Meanwhile, Google has built the infrastructure and tools to process and analyze the data and keep it secure.”\u003c/span>\u003c/p>\n\u003cp class=\"p1\">The toolkit will be available for free to nonprofits and academics. Businesses will need to \u003ca href=\"https://www.broadinstitute.org/gatk/about/#licensing\">pay to license it\u003c/a> from the Broad Institute.\u003c/p>\n\u003cp class=\"p1\">Some genetics experts say this announcement is evidence that the health industry is increasingly willing to embrace cloud computing. In the past, health organizations have been hesitant due to concerns about compliance and security.\u003c/p>\n\u003cp class=\"p1\">\"This suggests that the genomics industry has moved beyond the cloud debate,\" said Jonathan Hirsch, president and co-founder of Syapse, a Silicon Valley-based company that wants to bring more genomics data into routine clinical use.\u003c/p>\n\u003cp class=\"p1\">\"It is OK for researchers and clinicians to do genomics work in the cloud, and trust that cloud provider's hardware and software.\"\u003c/p>\n\u003cp class=\"p1\">In the future, Bingham said there may be opportunities to work on projects to further our genetic understanding of cancer and diabetes.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp class=\"p1\">But for now, he said, the organizations are focused on \"general purpose\" tools that aren't specific to a disease and can be used by researchers everywhere.\u003c/p>\n\n","blocks":[],"excerpt":"Google has teamed up with one of the world's top genomics centers, the Broad Institute of Harvard and MIT, to work on a series of projects it claims will propel biomedical research.","status":"publish","parent":0,"modified":1477281302,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":5,"wordCount":532},"headData":{"title":"Google and Broad Institute Team Up to Bring Genomic Analysis to the Cloud | KQED","description":"Google has teamed up with one of the world's top genomics centers, the Broad Institute of Harvard and MIT, to work on a series of projects it claims will propel biomedical research.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"6154 http://ww2.kqed.org/futureofyou/?p=6154","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/06/24/google-and-broad-institute-team-up-to-bring-genomic-analysis-to-the-cloud/","disqusTitle":"Google and Broad Institute Team Up to Bring Genomic Analysis to the Cloud","path":"/futureofyou/6154/google-and-broad-institute-team-up-to-bring-genomic-analysis-to-the-cloud","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp class=\"p1\">\u003ca href=\"google.com\">Google\u003c/a> has teamed up with one of the world's top genomics centers, the \u003ca href=\"https://www.broadinstitute.org/\">Broad Institute of MIT\u003c/a> and Harvard, to work on a series of projects it claims will propel biomedical research.\u003c/p>\n\u003cp class=\"p1\">For the first joint project, engineers from both organizations will bring \"GATK,\" the Broad Institute's widely-used genome analysis toolkit, onto Google's cloud service and into the hands of researchers.\u003c/p>\n\u003cp class=\"p1\">\"The limiting factor is no longer getting the DNA sequenced,\" said Dr. Barry Starr, a Stanford geneticist and a contributor to KQED. \"It is now interpreting all of that information in a meaningful way.\"\u003c/p>\n\u003cp>The Broad Institute alone \u003ca href=\"http://www.technologyreview.com/news/532266/google-wants-to-store-your-genome/\">analyzed a massive 200 terabytes\u003c/a> of raw data in a single month. In the past decade, the institute has genotyped more than 1.4 million biological samples.\u003c/p>\n\u003cp>Google isn't the only tech company vying to use cloud-based technology to store and analyze this massive volume of genetic information. This is a point of competition between Google, IBM, Amazon, and Microsoft.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>But Google is now the only public cloud provider to offer the GATK toolkit as a service. By making the software available in the cloud, researchers can run it on large data-sets without access to local computing -- and that frees up both time and resources.\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">\"GATK was already available to researchers and tens of thousands have used the software to analyze their data,\" said Starr. \"Google adds the power of being able to handle much more data at a time.\"\u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">Google Genomics' product manager Jonathan Bingham told KQED two groups will benefit most from this partnership: small research groups who lack sophisticated computing, and any individual who wants to analyze large genomic data sets without needing to download them. \u003c/span>\u003c/p>\n\u003cp class=\"p1\">\u003cspan class=\"s1\">“Broad Institute has got a tremendous amount of expertise working with large numbers of biological samples and huge volumes of genomic data,\" Bingham explained. \"Meanwhile, Google has built the infrastructure and tools to process and analyze the data and keep it secure.”\u003c/span>\u003c/p>\n\u003cp class=\"p1\">The toolkit will be available for free to nonprofits and academics. Businesses will need to \u003ca href=\"https://www.broadinstitute.org/gatk/about/#licensing\">pay to license it\u003c/a> from the Broad Institute.\u003c/p>\n\u003cp class=\"p1\">Some genetics experts say this announcement is evidence that the health industry is increasingly willing to embrace cloud computing. In the past, health organizations have been hesitant due to concerns about compliance and security.\u003c/p>\n\u003cp class=\"p1\">\"This suggests that the genomics industry has moved beyond the cloud debate,\" said Jonathan Hirsch, president and co-founder of Syapse, a Silicon Valley-based company that wants to bring more genomics data into routine clinical use.\u003c/p>\n\u003cp class=\"p1\">\"It is OK for researchers and clinicians to do genomics work in the cloud, and trust that cloud provider's hardware and software.\"\u003c/p>\n\u003cp class=\"p1\">In the future, Bingham said there may be opportunities to work on projects to further our genetic understanding of cancer and diabetes.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp class=\"p1\">But for now, he said, the organizations are focused on \"general purpose\" tools that aren't specific to a disease and can be used by researchers everywhere.\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/6154/google-and-broad-institute-team-up-to-bring-genomic-analysis-to-the-cloud","authors":["3252"],"categories":["futureofyou_1064"],"tags":["futureofyou_465","futureofyou_91","futureofyou_120","futureofyou_196","futureofyou_131","futureofyou_453"],"featImg":"futureofyou_6396","label":"futureofyou"},"futureofyou_4352":{"type":"posts","id":"futureofyou_4352","meta":{"index":"posts_1591205157","site":"futureofyou","id":"4352","score":null,"sort":[1434566023000]},"guestAuthors":[],"slug":"new-app-helps-you-learn-std-status-faster","title":"New App Helps You Learn Your STD Status Faster","publishDate":1434566023,"format":"standard","headTitle":"Contributor | KQED Future of You | KQED Science","labelTerm":{"term":172,"site":"futureofyou"},"content":"\u003cp>\u003cem>Update, June 17, 2015:\u003c/em>\u003c/p>\n\u003cp>Planned Parenthood has launched a new app that allows California users to order confidential chlamydia and gonorrhea home test kits. \u003c/p>\n\u003cp>Once ordered, the test kit is sent to users by mail in discreet packaging with simple, step-by-step instructions. Users send a urine sample directly to Planned Parenthood labs and get test results privately through the app. If test results are positive, users are informed how to obtain treatment.\u003c/p>\n\u003cp>\u003ca href=\"http://www.plannedparenthood.org/get-care/online-std-testing/california?utm_source=affiliatehp&utm_medium=weblink&utm_term=ppac&utm_content=homeslide&utm_campaign=ppdirect\">Planned Parenthood Direct\u003c/a> is available for free through the Android or Apple app stores, but to order the test kit costs $149. \u003c/p>\n\u003cp>\u003cem>Original Post:\u003cbr>\n\u003c/em>\u003cbr>\nRamin Bastani wants to reduce the anxiety and hassle of testing for common sexually transmitted diseases.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>After being tested more than 50 times for various STDs, and often waiting weeks for results, the 39-year-old entrepreneur decided to devote himself to making the experience less awkward and easier. In 2010, he launched Los Angeles-based Healthvana, a service that gives patients immediate access to their lab results.\u003c/p>\n\u003cp>Patients who opt to receive their results via \u003ca href=\"https://www.healthvana.com\">Healthvana\u003c/a> receive an email instructing them to log in to the secure online portal. The time-stamped results can also be viewed through the official iPhone app or online (there is no Android or Windows mobile app).\u003c/p>\n\u003caside class=\"pullquote alignleft\">“STD rates continue to be highest in young people 15-24 years of age, especially for females.\"\u003ccite>California Dept. of Public Health Study\u003c/cite>\u003c/aside>\n\u003cp>“So many people never get their results,” Bastani says. “Ninety-nine percent of the time that I’ve been tested for STDs and HIV—and I’ve been tested a lot—after you go to the visit they say, ‘Thanks so much for coming in today, and if you don’t hear from us within 10 days, no news is good news.’ That’s how they leave you, that’s how test results are delivered.”\u003c/p>\n\u003cp>Bastani says it’s critical for patients to get access to information in real time. “No news is not good news,” he says.\u003c/p>\n\u003cp>Healthvana is integrated with laboratories, so as soon as lab results are done, they are sent to the patient through the Healthvana portal. Ideally, partners will share their results with each other before sex. The app, Bastani says, is the easiest way to view a prospective partner’s verified STD negative or positive status, because very few people carry paper results with them to clubs or bars.\u003c/p>\n\u003cp>The service can be used by people being tested for a variety of STDs, including chlamydia, gonorrhea and syphilis. The service also provides next-step options for treatments. Those seeking their HIV-status will receive negative results through the app, but will not receive positive results via Healthvana; Bastani hopes to soon allow HIV-positive patients to have their viral load verified.\u003c/p>\n\u003cp>“Healthvana empowers you to make better health care decisions,” he says.\u003c/p>\n\u003cfigure id=\"attachment_4371\" class=\"wp-caption alignright\" style=\"max-width: 449px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/06/Healthvana-People2.jpg\">\u003cimg class=\" wp-image-4371\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/06/Healthvana-People2-1180x885.jpg\" alt=\"CEO Ramin Bastani, looking at Healthvana app, with Operations Associate Ishani Winston and COO Sean Crockett, in the company's Los Angeles office. (Adil Chamakh/Healthvana) \" width=\"449\" height=\"336\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-960x720.jpg 960w\" sizes=\"(max-width: 449px) 100vw, 449px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">CEO Ramin Bastani, L, with Operations Associate Ishani Winston and COO Sean Crockett, in the company's Los Angeles office. (Adil Chamakh/Healthvana)\u003c/figcaption>\u003c/figure>\n\u003cp>A \u003ca href=\"http://www.cdph.ca.gov/Pages/NR14-061.aspx\">widely circulated 2014 report\u003c/a> from the California Department of Public Health found that in 2013 STD rates spiked; rates of newly reported gonorrhea cases rose 13 percent, and syphilis rose 18 percent, compared to 2012 levels.\u003c/p>\n\u003cp>“STD rates continue to be highest in young people 15-24 years of age, especially for females, with over 66 percent of female chlamydia cases and over 54 percent of female gonorrhea cases being in this narrow age group,” according to the study.\u003c/p>\n\u003cp>Dr. Jeffrey Klausner, a professor of medicine in the division of infectious diseases at the \u003ca href=\"http://healthsciences.ucla.edu/\">David Geffen School of Medicine at UCLA\u003c/a>, says young people under age 25 are most at risk for sexually transmitted diseases, partly because they use \"hookup\" apps like Tinder and Grindr. \u003c/p>\n\u003cp>“In the U.S. among young people, 90 percent of them get most of their information from smartphones,” Klausner says. “This is the way of the future for sexual health, because it’s private, people can be anonymous, it’s convenient.”\u003c/p>\n\u003cp>Klausner serves as a medical advisor to Healthvana and recommends people 25 and under get tested at least once each year. People with same-sex partners should be tested four times each year.\u003c/p>\n\u003cp>“It’s critical with the epidemics in the U.S. with chlamydia in young adults, HIV in men who have sex with men, that we de-stigmatize testing and make it easier,” he says.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"We are already seeing stunning results in folks accessing their STD results and accessing treatment more quickly as a result.\"\u003ccite>Whitney Engeran-Cordova, AIDS Healthcare Foundation\u003c/cite>\u003c/aside>\n\u003cp>To help stem the tide, especially among young people, Healthvana recently partnered with the Los Angeles-based \u003ca href=\"http://www.aidshealth.org/#/\">AIDS Healthcare Foundation\u003c/a> (AHF) to allow their patients real-time access to their test results on their mobile phones.\u003c/p>\n\u003cp>“We’re removing the stigma and barriers to getting tested. Everyone thinks about this, everybody knows the right things to do, but this makes the conversation easier,” Bastani says. “Show me your results, I’ll show you mine.”\u003c/p>\n\u003cp>In 2015, nearly 10,000 AIDS Healthcare Foundation patients received their test results through Healthvana; 70 percent of them accessed their records within four hours of the results being available.\u003c/p>\n\u003cp>“We are excited about our collaboration with Healthvana and are already seeing stunning results in folks accessing their STD results and accessing treatment more quickly as a result,” said Whitney Engeran-Cordova, senior director of the Public Health Division at AHF, in a statement.\u003c/p>\n\u003cp>Mike McKany, director of Public Health Division at the \u003ca href=\"https://www.aidshealth.org/archives/countries/us\">AIDS Healthcare Foundation Southern Bureau\u003c/a>, says most users are comfortable with the service and appreciate the convenience.\u003c/p>\n\u003cp>“I’m quite pleasantly pleased on how well it’s been received and how excited people are about it,” he says. “We’re looking at the way of the future. People will walk around with their health records on their phones, just like they have their financial data on their phones. I’m so pleased.”\u003c/p>\n\u003cp>Dr. Adam M. Rubinstein, an Illinois-based primary care physician specializing in internal medicine and psychopharmacology, says he often treats patients suffering from anxiety and sexually transmitted diseases.\u003c/p>\n\u003cp>“I think that the major benefit of the app is the immediate results back to the patient,” Rubinstein says, “because one of the major problems with STD testing is the fear and anxiety the patient experiences while waiting for their results. Getting results immediately will help to allay their fears or give them important information for seeking treatment, which is a good public health measure.”\u003c/p>\n\u003cp>However, he is concerned about patient privacy and the potential for hackers to get at the information, because the results, especially if positive, are incredibly sensitive.\u003c/p>\n\u003cp>“As long as they can overcome the issues of privacy, I think it’s great, Rubenstein says. “Patients are becoming consumers. I fully commend them. Unfortunately, fear and anxiety cause a lot of suffering and increased health care costs. This will enable patients to move forward in their day.” Rubinstein is not associated with Healthvana.\u003c/p>\n\u003cp>The service remains free to patients, because it is purchased by clinics and health care providers. There are dozens of participating clinics in seven states and the District of Colombia. Low-income patients without access to working phones benefit from Healthvana because they can view results online, even at public libraries.\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>Daniel Gaitan is the multimedia content producer and reporter for Life Matters Media, a nonprofit providing news and information about end of life-related issues. He's a contributor to Reuters Health and also serves as a general assignment reporter for the Kenosha News in Wisconsin. In 2013, he earned his M.A. from DePaul University in Chicago. Daniel also earned his B.A. in journalism from DePaul. In 2012, he was the proud recipient of the Carlos Hernandez Award in Meritorious Journalism.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Los Angeles developer hopes app will help people make healthier decisions.","status":"publish","parent":0,"modified":1477281546,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":32,"wordCount":1351},"headData":{"title":"New App Helps You Learn Your STD Status Faster | KQED","description":"Los Angeles developer hopes app will help people make healthier decisions.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"4352 http://ww2.kqed.org/futureofyou/?p=4352","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/06/17/new-app-helps-you-learn-std-status-faster/","disqusTitle":"New App Helps You Learn Your STD Status Faster","nprByline":"Daniel Gaitan","path":"/futureofyou/4352/new-app-helps-you-learn-std-status-faster","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cem>Update, June 17, 2015:\u003c/em>\u003c/p>\n\u003cp>Planned Parenthood has launched a new app that allows California users to order confidential chlamydia and gonorrhea home test kits. \u003c/p>\n\u003cp>Once ordered, the test kit is sent to users by mail in discreet packaging with simple, step-by-step instructions. Users send a urine sample directly to Planned Parenthood labs and get test results privately through the app. If test results are positive, users are informed how to obtain treatment.\u003c/p>\n\u003cp>\u003ca href=\"http://www.plannedparenthood.org/get-care/online-std-testing/california?utm_source=affiliatehp&utm_medium=weblink&utm_term=ppac&utm_content=homeslide&utm_campaign=ppdirect\">Planned Parenthood Direct\u003c/a> is available for free through the Android or Apple app stores, but to order the test kit costs $149. \u003c/p>\n\u003cp>\u003cem>Original Post:\u003cbr>\n\u003c/em>\u003cbr>\nRamin Bastani wants to reduce the anxiety and hassle of testing for common sexually transmitted diseases.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>After being tested more than 50 times for various STDs, and often waiting weeks for results, the 39-year-old entrepreneur decided to devote himself to making the experience less awkward and easier. In 2010, he launched Los Angeles-based Healthvana, a service that gives patients immediate access to their lab results.\u003c/p>\n\u003cp>Patients who opt to receive their results via \u003ca href=\"https://www.healthvana.com\">Healthvana\u003c/a> receive an email instructing them to log in to the secure online portal. The time-stamped results can also be viewed through the official iPhone app or online (there is no Android or Windows mobile app).\u003c/p>\n\u003caside class=\"pullquote alignleft\">“STD rates continue to be highest in young people 15-24 years of age, especially for females.\"\u003ccite>California Dept. of Public Health Study\u003c/cite>\u003c/aside>\n\u003cp>“So many people never get their results,” Bastani says. “Ninety-nine percent of the time that I’ve been tested for STDs and HIV—and I’ve been tested a lot—after you go to the visit they say, ‘Thanks so much for coming in today, and if you don’t hear from us within 10 days, no news is good news.’ That’s how they leave you, that’s how test results are delivered.”\u003c/p>\n\u003cp>Bastani says it’s critical for patients to get access to information in real time. “No news is not good news,” he says.\u003c/p>\n\u003cp>Healthvana is integrated with laboratories, so as soon as lab results are done, they are sent to the patient through the Healthvana portal. Ideally, partners will share their results with each other before sex. The app, Bastani says, is the easiest way to view a prospective partner’s verified STD negative or positive status, because very few people carry paper results with them to clubs or bars.\u003c/p>\n\u003cp>The service can be used by people being tested for a variety of STDs, including chlamydia, gonorrhea and syphilis. The service also provides next-step options for treatments. Those seeking their HIV-status will receive negative results through the app, but will not receive positive results via Healthvana; Bastani hopes to soon allow HIV-positive patients to have their viral load verified.\u003c/p>\n\u003cp>“Healthvana empowers you to make better health care decisions,” he says.\u003c/p>\n\u003cfigure id=\"attachment_4371\" class=\"wp-caption alignright\" style=\"max-width: 449px\">\u003ca href=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/06/Healthvana-People2.jpg\">\u003cimg class=\" wp-image-4371\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/06/Healthvana-People2-1180x885.jpg\" alt=\"CEO Ramin Bastani, looking at Healthvana app, with Operations Associate Ishani Winston and COO Sean Crockett, in the company's Los Angeles office. (Adil Chamakh/Healthvana) \" width=\"449\" height=\"336\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-1180x885.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-400x300.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/06/Healthvana-People2-960x720.jpg 960w\" sizes=\"(max-width: 449px) 100vw, 449px\">\u003c/a>\u003cfigcaption class=\"wp-caption-text\">CEO Ramin Bastani, L, with Operations Associate Ishani Winston and COO Sean Crockett, in the company's Los Angeles office. (Adil Chamakh/Healthvana)\u003c/figcaption>\u003c/figure>\n\u003cp>A \u003ca href=\"http://www.cdph.ca.gov/Pages/NR14-061.aspx\">widely circulated 2014 report\u003c/a> from the California Department of Public Health found that in 2013 STD rates spiked; rates of newly reported gonorrhea cases rose 13 percent, and syphilis rose 18 percent, compared to 2012 levels.\u003c/p>\n\u003cp>“STD rates continue to be highest in young people 15-24 years of age, especially for females, with over 66 percent of female chlamydia cases and over 54 percent of female gonorrhea cases being in this narrow age group,” according to the study.\u003c/p>\n\u003cp>Dr. Jeffrey Klausner, a professor of medicine in the division of infectious diseases at the \u003ca href=\"http://healthsciences.ucla.edu/\">David Geffen School of Medicine at UCLA\u003c/a>, says young people under age 25 are most at risk for sexually transmitted diseases, partly because they use \"hookup\" apps like Tinder and Grindr. \u003c/p>\n\u003cp>“In the U.S. among young people, 90 percent of them get most of their information from smartphones,” Klausner says. “This is the way of the future for sexual health, because it’s private, people can be anonymous, it’s convenient.”\u003c/p>\n\u003cp>Klausner serves as a medical advisor to Healthvana and recommends people 25 and under get tested at least once each year. People with same-sex partners should be tested four times each year.\u003c/p>\n\u003cp>“It’s critical with the epidemics in the U.S. with chlamydia in young adults, HIV in men who have sex with men, that we de-stigmatize testing and make it easier,” he says.\u003c/p>\n\u003caside class=\"pullquote alignright\">\"We are already seeing stunning results in folks accessing their STD results and accessing treatment more quickly as a result.\"\u003ccite>Whitney Engeran-Cordova, AIDS Healthcare Foundation\u003c/cite>\u003c/aside>\n\u003cp>To help stem the tide, especially among young people, Healthvana recently partnered with the Los Angeles-based \u003ca href=\"http://www.aidshealth.org/#/\">AIDS Healthcare Foundation\u003c/a> (AHF) to allow their patients real-time access to their test results on their mobile phones.\u003c/p>\n\u003cp>“We’re removing the stigma and barriers to getting tested. Everyone thinks about this, everybody knows the right things to do, but this makes the conversation easier,” Bastani says. “Show me your results, I’ll show you mine.”\u003c/p>\n\u003cp>In 2015, nearly 10,000 AIDS Healthcare Foundation patients received their test results through Healthvana; 70 percent of them accessed their records within four hours of the results being available.\u003c/p>\n\u003cp>“We are excited about our collaboration with Healthvana and are already seeing stunning results in folks accessing their STD results and accessing treatment more quickly as a result,” said Whitney Engeran-Cordova, senior director of the Public Health Division at AHF, in a statement.\u003c/p>\n\u003cp>Mike McKany, director of Public Health Division at the \u003ca href=\"https://www.aidshealth.org/archives/countries/us\">AIDS Healthcare Foundation Southern Bureau\u003c/a>, says most users are comfortable with the service and appreciate the convenience.\u003c/p>\n\u003cp>“I’m quite pleasantly pleased on how well it’s been received and how excited people are about it,” he says. “We’re looking at the way of the future. People will walk around with their health records on their phones, just like they have their financial data on their phones. I’m so pleased.”\u003c/p>\n\u003cp>Dr. Adam M. Rubinstein, an Illinois-based primary care physician specializing in internal medicine and psychopharmacology, says he often treats patients suffering from anxiety and sexually transmitted diseases.\u003c/p>\n\u003cp>“I think that the major benefit of the app is the immediate results back to the patient,” Rubinstein says, “because one of the major problems with STD testing is the fear and anxiety the patient experiences while waiting for their results. Getting results immediately will help to allay their fears or give them important information for seeking treatment, which is a good public health measure.”\u003c/p>\n\u003cp>However, he is concerned about patient privacy and the potential for hackers to get at the information, because the results, especially if positive, are incredibly sensitive.\u003c/p>\n\u003cp>“As long as they can overcome the issues of privacy, I think it’s great, Rubenstein says. “Patients are becoming consumers. I fully commend them. Unfortunately, fear and anxiety cause a lot of suffering and increased health care costs. This will enable patients to move forward in their day.” Rubinstein is not associated with Healthvana.\u003c/p>\n\u003cp>The service remains free to patients, because it is purchased by clinics and health care providers. There are dozens of participating clinics in seven states and the District of Colombia. Low-income patients without access to working phones benefit from Healthvana because they can view results online, even at public libraries.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\u003cem>Daniel Gaitan is the multimedia content producer and reporter for Life Matters Media, a nonprofit providing news and information about end of life-related issues. He's a contributor to Reuters Health and also serves as a general assignment reporter for the Kenosha News in Wisconsin. In 2013, he earned his M.A. from DePaul University in Chicago. Daniel also earned his B.A. in journalism from DePaul. In 2012, he was the proud recipient of the Carlos Hernandez Award in Meritorious Journalism.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/4352/new-app-helps-you-learn-std-status-faster","authors":["byline_futureofyou_4352"],"series":["futureofyou_172"],"categories":["futureofyou_1060"],"tags":["futureofyou_450","futureofyou_453","futureofyou_446","futureofyou_80","futureofyou_448","futureofyou_447","futureofyou_449"],"featImg":"futureofyou_4364","label":"futureofyou_172"},"futureofyou_4307":{"type":"posts","id":"futureofyou_4307","meta":{"index":"posts_1591205157","site":"futureofyou","id":"4307","score":null,"sort":[1434483945000]},"guestAuthors":[],"slug":"this-company-wants-to-mine-your-data-to-monitor-drug-safety-in-the-real-world","title":"This Company Wants to Mine Your Data to Monitor Drug Safety in the 'Real World'","publishDate":1434483945,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Each day, thousands of people turn to online discussion forums to share their health care experiences.\u003c/p>\n\u003cp>One site alone, \u003ca href=\"https://www.patientslikeme.com/\">PatientsLikeMe\u003c/a>, counts 350,000 patients worldwide who are using its service to compare symptoms, describe side effects to medications, and track the progress of their disease.\u003c/p>\n\u003cp>For PatientsLikeMe, all that personal health information is a potential gold-mine. It's not only attractive to large pharmaceutical vendors and clinical researchers, who will pay to eavesdrop on patient chats, but also government agencies.\u003c/p>\n\u003cp>This week, PatientsLikeMe signed a research agreement with the U.S. Food and Drug Administration, the government agency that is responsible for public health. The agency will assess whether the data will boost its drug safety surveillance efforts.\u003c/p>\n\u003cp>PatientsLikeMe has agreed to share the data with the FDA at no cost.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"\u003cspan class=\"s1\">FDA is interested in the patient's voice,\" said FDA spokeswoman Sandy Walsh in an email interview with KQED\u003cem>. \u003c/em>\u003c/span>\u003c/p>\n\u003cp>\"\u003cspan class=\"s1\">By design, this research collaboration agreement is intended to be exploratory,\" she explained. \"We have very little, if any, experience with data of this type.\"\u003cbr>\n\u003c/span>\u003c/p>\n\u003cp>\u003cspan class=\"s1\">This is the first time that \u003c/span>\u003cspan class=\"s1\">\u003ca href=\"http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/\">FDA's Center for Drug Evaluation and Research\u003c/a> has explored using a continuous source of patient data for drug safety, said Walsh. But going forward, the agency sees opportunities to tap into patient-generated health information on popular social media sites. \u003c/span>\u003c/p>\n\u003cp>That presents new opportunities for understanding the patient perspective -- but also raises privacy questions.\u003c/p>\n\u003cp>\u003cstrong>Should you be Concerned About Your Privacy?\u003c/strong>\u003c/p>\n\u003cp>Some privacy rights groups fear that patients have not been adequately informed that their intimate data could be shared with third parties.\u003c/p>\n\u003cp>The data that PatientsLikeMe collects won't include \"identifying\" information, like a patient's name and email, Heywood said. Partners and customers are \"contractually obligated\" to avoid \"re-identifying the data\" to connect symptoms to a specific patient.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.eff.org/\">Electronic Frontier Foundation\u003c/a>'s Lee Tien said he still harbors concerns about the type of data that is being collected and that patients haven't been adequately informed about where it's going. Tien is a senior staff attorney for the San Francisco-based foundation, which specializes in protecting people's civil liberties.\u003c/p>\n\u003cp>In its privacy policy, PatientsLikeMe states that it will not share personal information as part of the registration process. But if a patient shares it in a \"free text\" field like their biography or as part of a survey, PatientsLikeMe may share this information with its partners.\u003c/p>\n\u003cp>The company's privacy policy also \"reserves the right\" for regulatory bodies, like the FDA, to contact patients for follow-up information at the agency's request.\u003c/p>\n\u003cp>\"PatientsLikeMe is fairly well known as a 'sharing' site, so it's not a place for those who are strongly concerned about their own medical privacy,\" said Tien.\u003c/p>\n\u003cp>\u003cstrong>Understanding How Patients Respond to Drugs in the Real World\u003c/strong>\u003c/p>\n\u003cp>Some people may delight in handing over their data to a government agency like the FDA. This massive store of information may help future generations of patients avoid drugs that do more harm than good.\u003c/p>\n\u003cp>\"Clinical trials help us understand the effects of drugs, but it's very difficult to keep track of that once the drug hits the market,\" said Ben Heywood, co-founder and president of PatientsLikeMe.\u003c/p>\n\u003cp>Drug makers are flocking to PatientsLikeMe for those real-world insights. The company's pharmaceutical customers include Janssen Pharmaceuticals and Roche-owned Genentech.\u003c/p>\n\u003cp>Pharma companies are well-aware of the limitations of clinical trials. These studies involve a very small number of patients -- in the hundreds or low thousands, depending on the research phase. They are also skewed to favor certain demographics: the majority of participants are male, for instance. This is problematic as men and women often respond to drugs differently.\u003c/p>\n\u003cp>But on sites like PatientsLikeMe, patients share information about their medication use with each other in ways that can be documented and tracked. This data is stored in a structured format, and includes rows and columns about treatment, side effects, outcomes and symptomology.\u003c/p>\n\u003cp>\"Unlike clinical trials, we tend to bias a little bit towards women and our average age is in the mid-40s,\" said Heywood. The most popular patient communities on PatientsLikeMe are dedicated to fibromyalgia and multiple sclerosis.\u003c/p>\n\u003cp>[\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/05/15/womens-health-is-too-often-overlooked-will-digital-health-be-the-exception/\">Related: Women’s Health is Too Often Overlooked; Will Digital Health be the Exception.\u003c/a>]\u003c/p>\n\u003cp>In the future, PatientsLikeMe plans to supplement this database with data from mobile apps and sensors that patients use, such as an \u003ca href=\"http://www.alivecor.com/home\">AliveCor\u003c/a> heart health tracker.\u003c/p>\n\u003cp>Heywood has some ambitious plans for the research, which won't necessarily involve the FDA. He points out that not all side-effects are negative. He hopes that PatientsLikeMe can help uncover new uses for existing drugs. If\u003cspan style=\"line-height: 1.5\"> a large cohort of patients complain about an allergy medication that causes dry mouth, that same drug could help patients with ALS who routinely struggle with excess saliva. \u003c/span>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"In general, we're not trying to get drugs off the market,\" he said. \"We're trying to help individual patients find the right intervention.\"\u003c/p>\n\n","blocks":[],"excerpt":"For the first time, the Food and Drug Administration's drug safety division is partnering with a startup to tap patient-generated health information. ","status":"publish","parent":0,"modified":1434575943,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":29,"wordCount":885},"headData":{"title":"This Company Wants to Mine Your Data to Monitor Drug Safety in the 'Real World' | KQED","description":"For the first time, the Food and Drug Administration's drug safety division is partnering with a startup to tap patient-generated health information. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"4307 http://ww2.kqed.org/futureofyou/?p=4307","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/06/16/this-company-wants-to-mine-your-data-to-monitor-drug-safety-in-the-real-world/","disqusTitle":"This Company Wants to Mine Your Data to Monitor Drug Safety in the 'Real World'","path":"/futureofyou/4307/this-company-wants-to-mine-your-data-to-monitor-drug-safety-in-the-real-world","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Each day, thousands of people turn to online discussion forums to share their health care experiences.\u003c/p>\n\u003cp>One site alone, \u003ca href=\"https://www.patientslikeme.com/\">PatientsLikeMe\u003c/a>, counts 350,000 patients worldwide who are using its service to compare symptoms, describe side effects to medications, and track the progress of their disease.\u003c/p>\n\u003cp>For PatientsLikeMe, all that personal health information is a potential gold-mine. It's not only attractive to large pharmaceutical vendors and clinical researchers, who will pay to eavesdrop on patient chats, but also government agencies.\u003c/p>\n\u003cp>This week, PatientsLikeMe signed a research agreement with the U.S. Food and Drug Administration, the government agency that is responsible for public health. The agency will assess whether the data will boost its drug safety surveillance efforts.\u003c/p>\n\u003cp>PatientsLikeMe has agreed to share the data with the FDA at no cost.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"\u003cspan class=\"s1\">FDA is interested in the patient's voice,\" said FDA spokeswoman Sandy Walsh in an email interview with KQED\u003cem>. \u003c/em>\u003c/span>\u003c/p>\n\u003cp>\"\u003cspan class=\"s1\">By design, this research collaboration agreement is intended to be exploratory,\" she explained. \"We have very little, if any, experience with data of this type.\"\u003cbr>\n\u003c/span>\u003c/p>\n\u003cp>\u003cspan class=\"s1\">This is the first time that \u003c/span>\u003cspan class=\"s1\">\u003ca href=\"http://www.fda.gov/AboutFDA/CentersOffices/OfficeofMedicalProductsandTobacco/CDER/\">FDA's Center for Drug Evaluation and Research\u003c/a> has explored using a continuous source of patient data for drug safety, said Walsh. But going forward, the agency sees opportunities to tap into patient-generated health information on popular social media sites. \u003c/span>\u003c/p>\n\u003cp>That presents new opportunities for understanding the patient perspective -- but also raises privacy questions.\u003c/p>\n\u003cp>\u003cstrong>Should you be Concerned About Your Privacy?\u003c/strong>\u003c/p>\n\u003cp>Some privacy rights groups fear that patients have not been adequately informed that their intimate data could be shared with third parties.\u003c/p>\n\u003cp>The data that PatientsLikeMe collects won't include \"identifying\" information, like a patient's name and email, Heywood said. Partners and customers are \"contractually obligated\" to avoid \"re-identifying the data\" to connect symptoms to a specific patient.\u003c/p>\n\u003cp>The \u003ca href=\"https://www.eff.org/\">Electronic Frontier Foundation\u003c/a>'s Lee Tien said he still harbors concerns about the type of data that is being collected and that patients haven't been adequately informed about where it's going. Tien is a senior staff attorney for the San Francisco-based foundation, which specializes in protecting people's civil liberties.\u003c/p>\n\u003cp>In its privacy policy, PatientsLikeMe states that it will not share personal information as part of the registration process. But if a patient shares it in a \"free text\" field like their biography or as part of a survey, PatientsLikeMe may share this information with its partners.\u003c/p>\n\u003cp>The company's privacy policy also \"reserves the right\" for regulatory bodies, like the FDA, to contact patients for follow-up information at the agency's request.\u003c/p>\n\u003cp>\"PatientsLikeMe is fairly well known as a 'sharing' site, so it's not a place for those who are strongly concerned about their own medical privacy,\" said Tien.\u003c/p>\n\u003cp>\u003cstrong>Understanding How Patients Respond to Drugs in the Real World\u003c/strong>\u003c/p>\n\u003cp>Some people may delight in handing over their data to a government agency like the FDA. This massive store of information may help future generations of patients avoid drugs that do more harm than good.\u003c/p>\n\u003cp>\"Clinical trials help us understand the effects of drugs, but it's very difficult to keep track of that once the drug hits the market,\" said Ben Heywood, co-founder and president of PatientsLikeMe.\u003c/p>\n\u003cp>Drug makers are flocking to PatientsLikeMe for those real-world insights. The company's pharmaceutical customers include Janssen Pharmaceuticals and Roche-owned Genentech.\u003c/p>\n\u003cp>Pharma companies are well-aware of the limitations of clinical trials. These studies involve a very small number of patients -- in the hundreds or low thousands, depending on the research phase. They are also skewed to favor certain demographics: the majority of participants are male, for instance. This is problematic as men and women often respond to drugs differently.\u003c/p>\n\u003cp>But on sites like PatientsLikeMe, patients share information about their medication use with each other in ways that can be documented and tracked. This data is stored in a structured format, and includes rows and columns about treatment, side effects, outcomes and symptomology.\u003c/p>\n\u003cp>\"Unlike clinical trials, we tend to bias a little bit towards women and our average age is in the mid-40s,\" said Heywood. The most popular patient communities on PatientsLikeMe are dedicated to fibromyalgia and multiple sclerosis.\u003c/p>\n\u003cp>[\u003ca href=\"http://ww2.kqed.org/futureofyou/2015/05/15/womens-health-is-too-often-overlooked-will-digital-health-be-the-exception/\">Related: Women’s Health is Too Often Overlooked; Will Digital Health be the Exception.\u003c/a>]\u003c/p>\n\u003cp>In the future, PatientsLikeMe plans to supplement this database with data from mobile apps and sensors that patients use, such as an \u003ca href=\"http://www.alivecor.com/home\">AliveCor\u003c/a> heart health tracker.\u003c/p>\n\u003cp>Heywood has some ambitious plans for the research, which won't necessarily involve the FDA. He points out that not all side-effects are negative. He hopes that PatientsLikeMe can help uncover new uses for existing drugs. If\u003cspan style=\"line-height: 1.5\"> a large cohort of patients complain about an allergy medication that causes dry mouth, that same drug could help patients with ALS who routinely struggle with excess saliva. \u003c/span>\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"In general, we're not trying to get drugs off the market,\" he said. \"We're trying to help individual patients find the right intervention.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/4307/this-company-wants-to-mine-your-data-to-monitor-drug-safety-in-the-real-world","authors":["3252"],"categories":["futureofyou_452"],"tags":["futureofyou_445","futureofyou_38","futureofyou_422","futureofyou_453","futureofyou_270","futureofyou_80","futureofyou_443","futureofyou_441","futureofyou_442","futureofyou_451","futureofyou_444","futureofyou_174"],"featImg":"futureofyou_4311","label":"futureofyou"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. 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Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. 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But is this once sleepy suburb ready for them?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/American-Suburb-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/news/series/american-suburb-podcast","meta":{"site":"news","source":"kqed","order":"13"},"link":"/news/series/american-suburb-podcast/","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?mt=2&id=1287748328","tuneIn":"https://tunein.com/radio/American-Suburb-p1086805/","rss":"https://ww2.kqed.org/news/series/american-suburb-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkMzMDExODgxNjA5"}},"baycurious":{"id":"baycurious","title":"Bay Curious","tagline":"Exploring the Bay Area, one question at a time","info":"KQED’s new podcast, Bay Curious, gets to the bottom of the mysteries — both profound and peculiar — that give the Bay Area its unique identity. And we’ll do it with your help! You ask the questions. You decide what Bay Curious investigates. And you join us on the journey to find the answers.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Bay-Curious-Podcast-Tile-703x703-1.jpg","imageAlt":"\"KQED Bay Curious","officialWebsiteLink":"/news/series/baycurious","meta":{"site":"news","source":"kqed","order":"4"},"link":"/podcasts/baycurious","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/bay-curious/id1172473406","npr":"https://www.npr.org/podcasts/500557090/bay-curious","rss":"https://ww2.kqed.org/news/category/bay-curious-podcast/feed/podcast","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvbmV3cy9jYXRlZ29yeS9iYXktY3VyaW91cy1wb2RjYXN0L2ZlZWQvcG9kY2FzdA","stitcher":"https://www.stitcher.com/podcast/kqed/bay-curious","spotify":"https://open.spotify.com/show/6O76IdmhixfijmhTZLIJ8k"}},"bbc-world-service":{"id":"bbc-world-service","title":"BBC World Service","info":"The day's top stories from BBC News compiled twice daily in the week, once at weekends.","airtime":"MON-FRI 9pm-10pm, TUE-FRI 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/BBC-World-Service-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.bbc.co.uk/sounds/play/live:bbc_world_service","meta":{"site":"news","source":"BBC World Service"},"link":"/radio/program/bbc-world-service","subscribe":{"apple":"https://itunes.apple.com/us/podcast/global-news-podcast/id135067274?mt=2","tuneIn":"https://tunein.com/radio/BBC-World-Service-p455581/","rss":"https://podcasts.files.bbci.co.uk/p02nq0gn.rss"}},"code-switch-life-kit":{"id":"code-switch-life-kit","title":"Code Switch / Life Kit","info":"\u003cem>Code Switch\u003c/em>, which listeners will hear in the first part of the hour, has fearless and much-needed conversations about race. Hosted by journalists of color, the show tackles the subject of race head-on, exploring how it impacts every part of society — from politics and pop culture to history, sports and more.\u003cbr />\u003cbr />\u003cem>Life Kit\u003c/em>, which will be in the second part of the hour, guides you through spaces and feelings no one prepares you for — from finances to mental health, from workplace microaggressions to imposter syndrome, from relationships to parenting. The show features experts with real world experience and shares their knowledge. Because everyone needs a little help being human.\u003cbr />\u003cbr />\u003ca href=\"https://www.npr.org/podcasts/510312/codeswitch\">\u003cem>Code Switch\u003c/em> offical site and podcast\u003c/a>\u003cbr />\u003ca href=\"https://www.npr.org/lifekit\">\u003cem>Life Kit\u003c/em> offical site and podcast\u003c/a>\u003cbr />","airtime":"SUN 9pm-10pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Code-Switch-Life-Kit-Podcast-Tile-360x360-1.jpg","meta":{"site":"radio","source":"npr"},"link":"/radio/program/code-switch-life-kit","subscribe":{"apple":"https://podcasts.apple.com/podcast/1112190608?mt=2&at=11l79Y&ct=nprdirectory","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93d3cubnByLm9yZy9yc3MvcG9kY2FzdC5waHA_aWQ9NTEwMzEy","spotify":"https://open.spotify.com/show/3bExJ9JQpkwNhoHvaIIuyV","rss":"https://feeds.npr.org/510312/podcast.xml"}},"commonwealth-club":{"id":"commonwealth-club","title":"Commonwealth Club of California Podcast","info":"The Commonwealth Club of California is the nation's oldest and largest public affairs forum. 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