Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'
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But what happens when patients want to search possible symptoms of a disease or ailment online?\u003c/p>\n\u003cp>It's common to search for treatments for a migraine or stomach pain on WebMD, or a flu strain on the Centers for Disease Control and Prevention website. But there's no way to know who else may be privy to that search information. So where do the data go when a patient presses enter?\u003c/p>\n\u003cp>That's what Tim Libert, a doctoral student at the University of Pennsylvania, wanted to know. He has been \u003ca href=\"https://timlibert.me/pdf/Libert-2015-Health_Privacy_on_Web.pdf\">researching what happens with information\u003c/a> that people search online and spoke with NPR's Robert Siegel about the privacy implications.\u003c/p>\n\u003chr>\n\u003ch3>\u003cstrong>Interview Highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On what happens when someone searches a health issue\u003c/strong>\u003c/p>\n\u003cp>I took a list of 2,000 common disease names — I mean everything from migraines to breast cancer. I ran those through a search engine and I found about 80,000 pages that were related to those terms. I looked at those pages and I found about 90 percent of those, when you load the page on your computer, it tells hidden parties the address of the page you're looking at. In cases where that address has the name of the disease or something, these hidden parties get to find out what it is you're interested in.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\u003cstrong>On who these hidden parties are, and why they're interested\u003c/strong>\u003c/p>\n\u003cp>Most of the times it's advertisers — so these are your marquee names, your Googles and Facebooks. But I also found kind of further down there a fair amount of tracking going on by data brokers. So these are companies like Experian and Acxiom. And their core business model is not advertising per se, but selling information about you to whoever wants to buy it.\u003c/p>\n\u003cp>\u003cstrong>On what they would do with this search information\u003c/strong>\u003c/p>\n\u003cp>There's actually companies that sell lists of people who have different diseases or symptoms. There's been some kind of chilling cases: [There were] companies selling lists of people who had been raped or people who had AIDS. So there's a market for this stuff.\u003c/p>\n\u003cp>\u003cstrong>On the \u003c/strong>\u003cstrong>Health Insurance Portability and Accountability Act of 1996 [HIPAA]\u003c/strong>\u003cstrong> and its relation to online data privacy\u003c/strong>\u003c/p>\n\u003cp>HIPAA's a pretty good law, but HIPAA was made long before the Web was really in everybody's home and very well before smartphones existed.\u003c/p>\n\u003cp>Anything that is happening on the Web today is pretty much completely unregulated. There's really no oversight and there's no real standards either. Companies aren't required to encrypt the information to keep it in a secure place. And we've also been seeing a lot lately that this is of interest to criminals, so there is additional kind of worry that not only is it not protected by HIPAA — it's not really protected at all.\u003c/p>\n\u003chr>\n\u003cp>The CDC pointed us to \u003ca href=\"http://www.cdc.gov/other/privacy.html\">its online privacy policy\u003c/a>, which says the data it sends to Google Analytics, for instance, are anonymized. But Libert says that's \"not nearly sufficient.\" He says that doesn't provide the kind of protection that federal law requires for doctors' visits.\u003c/p>\n\u003cp>In a statement, WebMD says that it \"may collect data about our users' online browsing and use that data to deliver advertisements to our users. WebMD's collection and use of data is described in greater detail in our Privacy Policy. The policy also describes how we protect user information and the choices we offer users for opting out of behavioral advertising by WebMD.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">\u003cem>Copyright 2015 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Online+Health+Searches+Aren%27t+Always+Confidential+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/em>\u003c/div>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n","blocks":[],"excerpt":"Searching a medical issue on the Internet seems harmless enough, but one researcher found that online medical searches may be seen by hidden parties, and the data even sold for profit.","status":"publish","parent":0,"modified":1477281741,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":16,"wordCount":626},"headData":{"title":"Online Health Searches Aren't Always Confidential | KQED","description":"Searching a medical issue on the Internet seems harmless enough, but one researcher found that online medical searches may be seen by hidden parties, and the data even sold for profit.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Online Health Searches Aren't Always Confidential","datePublished":"2015-06-10T16:50:32.000Z","dateModified":"2016-10-24T04:02:21.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"4079 http://ww2.kqed.org/futureofyou/?p=4079","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/06/10/online-health-searches-arent-always-confidential/","disqusTitle":"Online Health Searches Aren't Always Confidential","nprByline":"NPR Staff","nprStoryId":"412893469","nprApiLink":"http://api.npr.org/query?id=412893469&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"http://www.npr.org/sections/alltechconsidered/2015/06/08/412893469/online-health-searches-arent-always-confidential?ft=nprml&f=412893469","nprRetrievedStory":"1","nprPubDate":"Tue, 09 Jun 2015 15:57:00 -0400","nprStoryDate":"Mon, 08 Jun 2015 16:41:00 -0400","nprLastModifiedDate":"Tue, 09 Jun 2015 15:57:46 -0400","nprAudio":"http://pd.npr.org/anon.npr-mp3/npr/atc/2015/06/20150608_atc_online_health_searches_arent_always_confidential_.mp3?orgId=1&topicId=1019&d=215&p=2&story=412893469&t=progseg&e=412923703&seg=17&ft=nprml&f=412893469","nprAudioM3u":"http://api.npr.org/m3u/1412942738-c60b3e.m3u?orgId=1&topicId=1019&d=215&p=2&story=412893469&t=progseg&e=412923703&seg=17&ft=nprml&f=412893469","path":"/futureofyou/4079/online-health-searches-arent-always-confidential","audioUrl":"http://pd.npr.org/anon.npr-mp3/npr/atc/2015/06/20150608_atc_online_health_searches_arent_always_confidential_.mp3?orgId=1&topicId=1019&d=215&p=2&story=412893469&t=progseg&e=412923703&seg=17&ft=nprml&f=412893469","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>In the privacy of a doctor's office, a patient can ask any question and have it be covered under doctor-patient confidentiality. But what happens when patients want to search possible symptoms of a disease or ailment online?\u003c/p>\n\u003cp>It's common to search for treatments for a migraine or stomach pain on WebMD, or a flu strain on the Centers for Disease Control and Prevention website. But there's no way to know who else may be privy to that search information. So where do the data go when a patient presses enter?\u003c/p>\n\u003cp>That's what Tim Libert, a doctoral student at the University of Pennsylvania, wanted to know. He has been \u003ca href=\"https://timlibert.me/pdf/Libert-2015-Health_Privacy_on_Web.pdf\">researching what happens with information\u003c/a> that people search online and spoke with NPR's Robert Siegel about the privacy implications.\u003c/p>\n\u003chr>\n\u003ch3>\u003cstrong>Interview Highlights\u003c/strong>\u003c/h3>\n\u003cp>\u003cstrong>On what happens when someone searches a health issue\u003c/strong>\u003c/p>\n\u003cp>I took a list of 2,000 common disease names — I mean everything from migraines to breast cancer. I ran those through a search engine and I found about 80,000 pages that were related to those terms. I looked at those pages and I found about 90 percent of those, when you load the page on your computer, it tells hidden parties the address of the page you're looking at. In cases where that address has the name of the disease or something, these hidden parties get to find out what it is you're interested in.\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>On who these hidden parties are, and why they're interested\u003c/strong>\u003c/p>\n\u003cp>Most of the times it's advertisers — so these are your marquee names, your Googles and Facebooks. But I also found kind of further down there a fair amount of tracking going on by data brokers. So these are companies like Experian and Acxiom. And their core business model is not advertising per se, but selling information about you to whoever wants to buy it.\u003c/p>\n\u003cp>\u003cstrong>On what they would do with this search information\u003c/strong>\u003c/p>\n\u003cp>There's actually companies that sell lists of people who have different diseases or symptoms. There's been some kind of chilling cases: [There were] companies selling lists of people who had been raped or people who had AIDS. So there's a market for this stuff.\u003c/p>\n\u003cp>\u003cstrong>On the \u003c/strong>\u003cstrong>Health Insurance Portability and Accountability Act of 1996 [HIPAA]\u003c/strong>\u003cstrong> and its relation to online data privacy\u003c/strong>\u003c/p>\n\u003cp>HIPAA's a pretty good law, but HIPAA was made long before the Web was really in everybody's home and very well before smartphones existed.\u003c/p>\n\u003cp>Anything that is happening on the Web today is pretty much completely unregulated. There's really no oversight and there's no real standards either. Companies aren't required to encrypt the information to keep it in a secure place. And we've also been seeing a lot lately that this is of interest to criminals, so there is additional kind of worry that not only is it not protected by HIPAA — it's not really protected at all.\u003c/p>\n\u003chr>\n\u003cp>The CDC pointed us to \u003ca href=\"http://www.cdc.gov/other/privacy.html\">its online privacy policy\u003c/a>, which says the data it sends to Google Analytics, for instance, are anonymized. But Libert says that's \"not nearly sufficient.\" He says that doesn't provide the kind of protection that federal law requires for doctors' visits.\u003c/p>\n\u003cp>In a statement, WebMD says that it \"may collect data about our users' online browsing and use that data to deliver advertisements to our users. WebMD's collection and use of data is described in greater detail in our Privacy Policy. The policy also describes how we protect user information and the choices we offer users for opting out of behavioral advertising by WebMD.\"\u003c/p>\n\u003cdiv class=\"fullattribution\">\u003cem>Copyright 2015 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Online+Health+Searches+Aren%27t+Always+Confidential+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\" alt=\"\">\u003c/em>\u003c/div>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/4079/online-health-searches-arent-always-confidential","authors":["byline_futureofyou_4079"],"categories":["futureofyou_1060"],"tags":["futureofyou_425","futureofyou_138","futureofyou_423","futureofyou_307","futureofyou_102","futureofyou_80","futureofyou_424"],"featImg":"futureofyou_4083","label":"futureofyou"},"futureofyou_2519":{"type":"posts","id":"futureofyou_2519","meta":{"index":"posts_1591205157","site":"futureofyou","id":"2519","score":null,"sort":[1431368072000]},"guestAuthors":[],"slug":"patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death","title":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'","publishDate":1431368072,"format":"image","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>For Julia Hallisy, putting medical information into the hands of patients isn't just a professional crusade; it's a personal one.\u003c/p>\n\u003cp>Hallisy learned the hard way that patients and their families, and not just doctors, can benefit from accessing personal medical documents, including scans, test results and written notes.\u003c/p>\n\u003cp>That's because her daughter Kate \u003ca href=\"http://empoweredpatientcoalition.org/julia-hallisy-inspirational-story-of-kate-hallisy-published-in-california-woman-magazine/\">fought cancer five times\u003c/a> by the time she was ten-years-old.\u003c/p>\n\u003cp>\"After requesting Kate’s records, I saw all sorts of things that concerned me, whether it was tired residents making mistakes, factual errors, or written notes that contradicted each other.\"\u003c/p>\n\u003cp>\"Most people don't ask for a copy of their medical record, which is a terrible mistake,\" she said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Kate passed away in 2000, the same year that the government \u003ca href=\"http://www.hhs.gov/ocr/privacy/hipaa/administrative/privacyrule/prdecember2000all8parts.pdf\">passed a rule requiring\u003c/a> that health providers share a paper copy of the medical record at a \"reasonable cost\" to patients who request it (\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">view an estimate of state-by-state costs for 75-pages here\u003c/a>). In 2009, the Obama administration went one step further with a program\u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures-2/patient-ability-electronically-view-download-transmit-vdt-health-information\"> known as \"Meaningful Use,\" which would reward\u003c/a> physicians who provide a percentage of patients with timely, electronic access to their medical record -- and later penalized those who failed to do so.\u003c/p>\n\u003cp>But many patients are struggling to access their medical information, electronic or otherwise. According to a \u003ca href=\"http://www.pwc.com/us/en/health-industries/publications/putting-patients-into-meaningful-use.jhtml\">recent report \u003c/a> from PricewaterhouseCoopers, only 14 percent of patients get their medical records electronically from their physicians' offices. Thirty percent say they don't understand why they would need to do so.\u003c/p>\n\u003cp>Today, the debate is raging between doctors, patient groups and the government about how to mediate patients' access to their own health records.\u003c/p>\n\u003cfigure id=\"attachment_2574\" class=\"wp-caption alignright\" style=\"max-width: 385px\">\u003cimg class=\" wp-image-2574\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg\" alt=\"Julia Hallisy and her daughter Kate \" width=\"385\" height=\"327\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg 705w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-400x340.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate.jpg 940w\" sizes=\"(max-width: 385px) 100vw, 385px\">\u003cfigcaption class=\"wp-caption-text\">Julia Hallisy and her daughter Kate \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The approach set forth by the \u003ca href=\"http://www.cms.gov/\">Centers for Medicare and Medicaid Services\u003c/a> (CMS) puts the responsibility squarely on doctors for ensuring \u003cem>five percent\u003c/em> of their patients \"\u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">views, downloads, or transmits his or her health information to a third party.\u003c/a>\"\u003c/p>\n\u003cp>\"Physicians are being held accountable for patients' freedom of choice,\" said Dr. Steve J. Stack, president-elect of the American Medical Association (AMA).\u003c/p>\n\u003cp>Stack \u003ca href=\"http://www.ama-assn.org/ama/pub/news/news/2014/2014-12-17-cms-meaningful-use-penalties.page\">said 52 percent of physicians\u003c/a> who treat Medicare patients are currently being penalized for failing to meet the requirement. Those losses are \u003ca href=\"http://www.fierceemr.com/story/cms-estimates-eps-will-pay-200-million-meaningful-use-penalties/2015-02-12\">expected to equal some $200 million \u003c/a>this year alone.\u003c/p>\n\u003cp>Doctors are taking extreme measures to meet this rule, including sitting the patient down and requesting that they log-in to a \"patient portal\" to view their health information before they can go home, physician groups say.\u003c/p>\n\u003cp>In response to these concerns, CMS is now considering \u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/menu-measures/patient-electronic-access\">rolling-back the 5 percent requirement with a proposed rule change. \u003c/a>If it passes after a \u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">comment period ending on June 16\u003c/a> of this year, eligible medical professionals must only prove that \u003cem>one patient\u003c/em> views, downloads, or transmits his or her health information, rather than \u003cem>5 percent\u003c/em>.\u003c/p>\n\u003cp>Some groups like the AMA believe the proposed change is a positive step as it relieves some of the pressure of overburdened doctors.\u003c/p>\n\u003cp>As Stack points out, doctors will still need to provide 50 percent of their patients access to their medical information within 4 days (with an option to withhold sensitive materials.) But this differs from the so-called \"5 percent\" clause, as doctors aren't on the line if patients don't view their record -- or realize it exists.\u003c/p>\n\u003cp>But patient advocates are up in arms.\u003c/p>\n\u003cp>\"Are they [the Obama Administration] trying to push our buttons? This is a slap in the face to patient rights,\" said Regina Holliday, a patient activist from Grantsville, Maryland.\u003c/p>\n\u003cp>\u003cstrong>The \"Messy\" Access Problem\u003c/strong>\u003c/p>\n\u003cp>For decades, patients had little or no access to their medical information. This was considered the exclusive realm of physicians.\u003c/p>\n\u003cp>\u003ca href=\"http://hitconsultant.net/2014/03/10/improved-patient-engagement-for-better-outcomes/\">But recent research has shown \u003c/a>that when patients engage with their medical data, it leads to better outcomes. And cancer survivors like Dave deBronkart, who goes by his Internet moniker “\u003ca href=\"http://www.epatientdave.com/\">ePatient Dave\u003c/a>” say patient involvement can lead to fewer fatal mistakes.\u003c/p>\n\u003cp>Medical records contain errors about “two-thirds of the time,” he said. \"It's a matter of life and death.\" It's tricky to estimate exactly how many medical records contain mistakes. But in recent years, the issue has received national attention with patient safety groups\u003ca href=\"http://www.healthcareitnews.com/news/deaths-by-medical-mistakes-hit-records\"> making calls in the Senate\u003c/a> for electronic systems that minimize cognitive errors.\u003c/p>\n\u003cp>So why are health providers pushing back on legitimate patient requests?\u003c/p>\n\u003cp>They may harbor fears that opening up data would negatively affect their bottom-line. Economists\u003ca href=\"http://www.nber.org/papers/w20565\"> have found\u003c/a> that in states where it's easier and cheaper to access a medical record, patients are more likely to make a switch to a different physician or specialist.\u003c/p>\n\u003cp>As a result, many patients are told they \u003cem>can\u003c/em> access their medical record electronically, but it remains a logistical nightmare to do so.\u003c/p>\n\u003cp>High-profile technology investor Esther Dyson said she paid an intern to spend a summer filing requests for her medical information from different hospitals and clinics. After months of work, this intern was able to access no more than a few records -- the rest had been deleted or lost.\u003c/p>\n\u003cp>\"It was a very messy process,\" Dyson recalled.\u003c/p>\n\u003cp>Most people, particularly those who are suffering from serious illness, don't have the resources to hire an assistant or \u003ca href=\"https://picnichealth.com/\">pay a company\u003c/a> to pull together their medical information.\u003c/p>\n\u003cp>\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">In addition, reports have shown that some providers will charge fees\u003c/a> of over $1.50 per page of a medical record, which can result in a total bill of in excess of $1,000. Moreover, many people face long wait-times and reports are often filled with scrawled notes and medical jargon.\u003c/p>\n\u003cp>\u003cstrong>Can Technology Make a Difference?\u003c/strong>\u003c/p>\n\u003cp>But patient advocates like Hallisy are optimistic that patient data will flow more easily as health care shifts from paper-based to digital systems.\u003c/p>\n\u003cp>It costs far less for a hospital to reproduce an electronic copy of a document than to print it. And logically speaking, it should be far more efficient to perform a computer-based search than search through a stack of files.\u003c/p>\n\u003cfigure id=\"attachment_2561\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2561\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/medical-dat-800x598.jpg\" alt=\"Hallisy stacked her daughter's medical reports\" width=\"800\" height=\"598\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-800x598.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-1180x881.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-960x717.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Hallisy stacked her daughter's medical reports \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But this is easier said than done.\u003c/p>\n\u003cp>Many hospitals and clinics have been reluctant to invest in web tools that would make it more seamless for patients to access their medical information online. And electronic medical records cannot \u003ca href=\"http://ww2.kqed.org/futureofyou/broken-medical-records\">be efficiently or securely shared between doctors\u003c/a>, making it difficult to collect the records from various hospitals and clinics.\u003c/p>\n\u003cp>Instead, many patients today will be deferred to a web \"portal\" of sorts, \u003ca href=\"http://www.epicpc.com/patient-portal/\">like Epic's MyChart\u003c/a>, to view fragments of their medication information.\u003c/p>\n\u003cp>But many of these portals are outdated, said former Department of Health and Human Services technology chief Bryan Sivak.\u003c/p>\n\u003cp>\"Many offer little useful functionality and are difficult to use,\" said Sivak. \"Frankly, they could be designed much better.\"\u003c/p>\n\u003cp>Some hospitals have argued that patients aren't accessing these portals, so they must be indifferent. Why bother investing in more modern technology?\u003c/p>\n\u003cp>\"You often hear the argument that not every patient wants to spend the time,\" said Joseph Smith, a cardiologist and chief medical officer for \u003ca href=\"http://www.westhealth.org/institute\">West Health\u003c/a>, a nonprofit medical research organization.\u003c/p>\n\u003cp>\"And not every hospital has been able to make it through the technical requirements as we shift away from paper,\" he said. \"We are in an awkward time.\"\u003c/p>\n\u003cp>\u003cstrong>\"A Slap in the Face to Patient Rights\"\u003c/strong>\u003c/p>\n\u003cp>For Hallisy and other patient advocates, hospitals are showing signs of giving up on patients -- without investing in user-friendly tools and education programs.\u003c/p>\n\u003cp>And the proposed rule change is yet another example of the government and health sector folding its cards too soon, say advocates.\u003c/p>\n\u003cp>\"We needed to give providers a high enough threshold [5 percent], so they would do the work and incorporate patient facing tools into the practice,\" said Arien Malec, who worked as technology coordinator for the \u003ca href=\"http://www.hhs.gov/\">department of Health and Human Services. \u003c/a>\u003c/p>\n\u003cp>\"Now, they won't have to tell any patients. If they can’t find out how to access their medical record, the hospital doesn’t have to help them,\" he said.\u003c/p>\n\u003cp>Hallisy fears that hospitals may slash budgets for patient-facing tools to access medical data.\u003c/p>\n\u003cfigure id=\"attachment_2567\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2567\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/regina-holliday-800x600.jpg\" alt=\"Regina Holliday uses art to spread the word about patient rights \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-1180x883.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-960x719.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Regina Holliday uses art to spread the word about patient rights \u003ccite>(Regina Holliday)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Holliday agrees: \"There's a bad joke circulating that the one person could be a hospital staff-member, like a chief nursing officer.\"\u003c/p>\n\u003cp>Holliday's husband died of kidney cancer in 2009. During his hospitalization, she requested to see a copy of his medical records, but the hospital informed her that it would take 21 days. As Holliday frequently points out, three weeks is a long time to wait for patients in critical condition.\u003c/p>\n\u003cp>\u003cstrong>Ownership versus Access\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>Technically speaking, patients don't own their medical record. Their doctors do.\u003c/p>\n\u003cp>And that has led to much of the complications around patient data rights.\u003c/p>\n\u003cp>In the policy world, questions often arise like, who owns the medical record data if a patient has multiple doctors? And who has the right to delete it or bar electronic access? And as patients start generating medical information from the latest apps and devices, will they own that -- or would the developer?\u003c/p>\n\u003cp>Moreover, it still remains a contested issue about which parties or groups are responsible for educating patients about the value of access to their medical record. Some have pointed the finger at patient advocates; some say it's the responsibility of the physician or the federal government.\u003c/p>\n\u003cp>But setbacks aside, some industry insiders are hopeful that the health sector will find answers in the coming years, \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/13/startups-entrepreneurs-try-to-solve-medical-records-debacle/\">particularly given the recent outpouring of patient-focused tools\u003c/a> from Silicon Valley and other tech hubs.\u003c/p>\n\u003cp>\"It gets a little better every year. It's baby steps in health IT,\" said Dan Haley, a regulatory affairs expert at electronic health record company \u003ca href=\"http://athenahealth.com/\">AthenaHealth\u003c/a>.\u003c/p>\n\u003cp>But for her part, Hallisy has no intention of sitting back and waiting for change:\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"This means the kind of work I do is more important than ever,\" she said. \"Medicine is changing. It could be interactive and collaborative, but we need the public's help.\"\u003c/p>\n\n","blocks":[],"excerpt":"Most patients in the U.S. are still struggling to access a copy of their medical record, electronic or otherwise. Is there hope for the future? Patient advocates, physician groups and policymakers speak out. ","status":"publish","parent":0,"modified":1477282816,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":58,"wordCount":1729},"headData":{"title":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death' | KQED","description":"Most patients in the U.S. are still struggling to access a copy of their medical record, electronic or otherwise. Is there hope for the future? Patient advocates, physician groups and policymakers speak out. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'","datePublished":"2015-05-11T18:14:32.000Z","dateModified":"2016-10-24T04:20:16.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"2519 http://ww2.kqed.org/futureofyou/?p=2519","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/05/11/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death/","disqusTitle":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'","path":"/futureofyou/2519/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>For Julia Hallisy, putting medical information into the hands of patients isn't just a professional crusade; it's a personal one.\u003c/p>\n\u003cp>Hallisy learned the hard way that patients and their families, and not just doctors, can benefit from accessing personal medical documents, including scans, test results and written notes.\u003c/p>\n\u003cp>That's because her daughter Kate \u003ca href=\"http://empoweredpatientcoalition.org/julia-hallisy-inspirational-story-of-kate-hallisy-published-in-california-woman-magazine/\">fought cancer five times\u003c/a> by the time she was ten-years-old.\u003c/p>\n\u003cp>\"After requesting Kate’s records, I saw all sorts of things that concerned me, whether it was tired residents making mistakes, factual errors, or written notes that contradicted each other.\"\u003c/p>\n\u003cp>\"Most people don't ask for a copy of their medical record, which is a terrible mistake,\" she said.\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>Kate passed away in 2000, the same year that the government \u003ca href=\"http://www.hhs.gov/ocr/privacy/hipaa/administrative/privacyrule/prdecember2000all8parts.pdf\">passed a rule requiring\u003c/a> that health providers share a paper copy of the medical record at a \"reasonable cost\" to patients who request it (\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">view an estimate of state-by-state costs for 75-pages here\u003c/a>). In 2009, the Obama administration went one step further with a program\u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures-2/patient-ability-electronically-view-download-transmit-vdt-health-information\"> known as \"Meaningful Use,\" which would reward\u003c/a> physicians who provide a percentage of patients with timely, electronic access to their medical record -- and later penalized those who failed to do so.\u003c/p>\n\u003cp>But many patients are struggling to access their medical information, electronic or otherwise. According to a \u003ca href=\"http://www.pwc.com/us/en/health-industries/publications/putting-patients-into-meaningful-use.jhtml\">recent report \u003c/a> from PricewaterhouseCoopers, only 14 percent of patients get their medical records electronically from their physicians' offices. Thirty percent say they don't understand why they would need to do so.\u003c/p>\n\u003cp>Today, the debate is raging between doctors, patient groups and the government about how to mediate patients' access to their own health records.\u003c/p>\n\u003cfigure id=\"attachment_2574\" class=\"wp-caption alignright\" style=\"max-width: 385px\">\u003cimg class=\" wp-image-2574\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg\" alt=\"Julia Hallisy and her daughter Kate \" width=\"385\" height=\"327\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg 705w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-400x340.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate.jpg 940w\" sizes=\"(max-width: 385px) 100vw, 385px\">\u003cfigcaption class=\"wp-caption-text\">Julia Hallisy and her daughter Kate \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The approach set forth by the \u003ca href=\"http://www.cms.gov/\">Centers for Medicare and Medicaid Services\u003c/a> (CMS) puts the responsibility squarely on doctors for ensuring \u003cem>five percent\u003c/em> of their patients \"\u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">views, downloads, or transmits his or her health information to a third party.\u003c/a>\"\u003c/p>\n\u003cp>\"Physicians are being held accountable for patients' freedom of choice,\" said Dr. Steve J. Stack, president-elect of the American Medical Association (AMA).\u003c/p>\n\u003cp>Stack \u003ca href=\"http://www.ama-assn.org/ama/pub/news/news/2014/2014-12-17-cms-meaningful-use-penalties.page\">said 52 percent of physicians\u003c/a> who treat Medicare patients are currently being penalized for failing to meet the requirement. Those losses are \u003ca href=\"http://www.fierceemr.com/story/cms-estimates-eps-will-pay-200-million-meaningful-use-penalties/2015-02-12\">expected to equal some $200 million \u003c/a>this year alone.\u003c/p>\n\u003cp>Doctors are taking extreme measures to meet this rule, including sitting the patient down and requesting that they log-in to a \"patient portal\" to view their health information before they can go home, physician groups say.\u003c/p>\n\u003cp>In response to these concerns, CMS is now considering \u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/menu-measures/patient-electronic-access\">rolling-back the 5 percent requirement with a proposed rule change. \u003c/a>If it passes after a \u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">comment period ending on June 16\u003c/a> of this year, eligible medical professionals must only prove that \u003cem>one patient\u003c/em> views, downloads, or transmits his or her health information, rather than \u003cem>5 percent\u003c/em>.\u003c/p>\n\u003cp>Some groups like the AMA believe the proposed change is a positive step as it relieves some of the pressure of overburdened doctors.\u003c/p>\n\u003cp>As Stack points out, doctors will still need to provide 50 percent of their patients access to their medical information within 4 days (with an option to withhold sensitive materials.) But this differs from the so-called \"5 percent\" clause, as doctors aren't on the line if patients don't view their record -- or realize it exists.\u003c/p>\n\u003cp>But patient advocates are up in arms.\u003c/p>\n\u003cp>\"Are they [the Obama Administration] trying to push our buttons? This is a slap in the face to patient rights,\" said Regina Holliday, a patient activist from Grantsville, Maryland.\u003c/p>\n\u003cp>\u003cstrong>The \"Messy\" Access Problem\u003c/strong>\u003c/p>\n\u003cp>For decades, patients had little or no access to their medical information. This was considered the exclusive realm of physicians.\u003c/p>\n\u003cp>\u003ca href=\"http://hitconsultant.net/2014/03/10/improved-patient-engagement-for-better-outcomes/\">But recent research has shown \u003c/a>that when patients engage with their medical data, it leads to better outcomes. And cancer survivors like Dave deBronkart, who goes by his Internet moniker “\u003ca href=\"http://www.epatientdave.com/\">ePatient Dave\u003c/a>” say patient involvement can lead to fewer fatal mistakes.\u003c/p>\n\u003cp>Medical records contain errors about “two-thirds of the time,” he said. \"It's a matter of life and death.\" It's tricky to estimate exactly how many medical records contain mistakes. But in recent years, the issue has received national attention with patient safety groups\u003ca href=\"http://www.healthcareitnews.com/news/deaths-by-medical-mistakes-hit-records\"> making calls in the Senate\u003c/a> for electronic systems that minimize cognitive errors.\u003c/p>\n\u003cp>So why are health providers pushing back on legitimate patient requests?\u003c/p>\n\u003cp>They may harbor fears that opening up data would negatively affect their bottom-line. Economists\u003ca href=\"http://www.nber.org/papers/w20565\"> have found\u003c/a> that in states where it's easier and cheaper to access a medical record, patients are more likely to make a switch to a different physician or specialist.\u003c/p>\n\u003cp>As a result, many patients are told they \u003cem>can\u003c/em> access their medical record electronically, but it remains a logistical nightmare to do so.\u003c/p>\n\u003cp>High-profile technology investor Esther Dyson said she paid an intern to spend a summer filing requests for her medical information from different hospitals and clinics. After months of work, this intern was able to access no more than a few records -- the rest had been deleted or lost.\u003c/p>\n\u003cp>\"It was a very messy process,\" Dyson recalled.\u003c/p>\n\u003cp>Most people, particularly those who are suffering from serious illness, don't have the resources to hire an assistant or \u003ca href=\"https://picnichealth.com/\">pay a company\u003c/a> to pull together their medical information.\u003c/p>\n\u003cp>\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">In addition, reports have shown that some providers will charge fees\u003c/a> of over $1.50 per page of a medical record, which can result in a total bill of in excess of $1,000. Moreover, many people face long wait-times and reports are often filled with scrawled notes and medical jargon.\u003c/p>\n\u003cp>\u003cstrong>Can Technology Make a Difference?\u003c/strong>\u003c/p>\n\u003cp>But patient advocates like Hallisy are optimistic that patient data will flow more easily as health care shifts from paper-based to digital systems.\u003c/p>\n\u003cp>It costs far less for a hospital to reproduce an electronic copy of a document than to print it. And logically speaking, it should be far more efficient to perform a computer-based search than search through a stack of files.\u003c/p>\n\u003cfigure id=\"attachment_2561\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2561\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/medical-dat-800x598.jpg\" alt=\"Hallisy stacked her daughter's medical reports\" width=\"800\" height=\"598\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-800x598.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-1180x881.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-960x717.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Hallisy stacked her daughter's medical reports \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But this is easier said than done.\u003c/p>\n\u003cp>Many hospitals and clinics have been reluctant to invest in web tools that would make it more seamless for patients to access their medical information online. And electronic medical records cannot \u003ca href=\"http://ww2.kqed.org/futureofyou/broken-medical-records\">be efficiently or securely shared between doctors\u003c/a>, making it difficult to collect the records from various hospitals and clinics.\u003c/p>\n\u003cp>Instead, many patients today will be deferred to a web \"portal\" of sorts, \u003ca href=\"http://www.epicpc.com/patient-portal/\">like Epic's MyChart\u003c/a>, to view fragments of their medication information.\u003c/p>\n\u003cp>But many of these portals are outdated, said former Department of Health and Human Services technology chief Bryan Sivak.\u003c/p>\n\u003cp>\"Many offer little useful functionality and are difficult to use,\" said Sivak. \"Frankly, they could be designed much better.\"\u003c/p>\n\u003cp>Some hospitals have argued that patients aren't accessing these portals, so they must be indifferent. Why bother investing in more modern technology?\u003c/p>\n\u003cp>\"You often hear the argument that not every patient wants to spend the time,\" said Joseph Smith, a cardiologist and chief medical officer for \u003ca href=\"http://www.westhealth.org/institute\">West Health\u003c/a>, a nonprofit medical research organization.\u003c/p>\n\u003cp>\"And not every hospital has been able to make it through the technical requirements as we shift away from paper,\" he said. \"We are in an awkward time.\"\u003c/p>\n\u003cp>\u003cstrong>\"A Slap in the Face to Patient Rights\"\u003c/strong>\u003c/p>\n\u003cp>For Hallisy and other patient advocates, hospitals are showing signs of giving up on patients -- without investing in user-friendly tools and education programs.\u003c/p>\n\u003cp>And the proposed rule change is yet another example of the government and health sector folding its cards too soon, say advocates.\u003c/p>\n\u003cp>\"We needed to give providers a high enough threshold [5 percent], so they would do the work and incorporate patient facing tools into the practice,\" said Arien Malec, who worked as technology coordinator for the \u003ca href=\"http://www.hhs.gov/\">department of Health and Human Services. \u003c/a>\u003c/p>\n\u003cp>\"Now, they won't have to tell any patients. If they can’t find out how to access their medical record, the hospital doesn’t have to help them,\" he said.\u003c/p>\n\u003cp>Hallisy fears that hospitals may slash budgets for patient-facing tools to access medical data.\u003c/p>\n\u003cfigure id=\"attachment_2567\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2567\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/regina-holliday-800x600.jpg\" alt=\"Regina Holliday uses art to spread the word about patient rights \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-1180x883.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-960x719.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Regina Holliday uses art to spread the word about patient rights \u003ccite>(Regina Holliday)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Holliday agrees: \"There's a bad joke circulating that the one person could be a hospital staff-member, like a chief nursing officer.\"\u003c/p>\n\u003cp>Holliday's husband died of kidney cancer in 2009. During his hospitalization, she requested to see a copy of his medical records, but the hospital informed her that it would take 21 days. As Holliday frequently points out, three weeks is a long time to wait for patients in critical condition.\u003c/p>\n\u003cp>\u003cstrong>Ownership versus Access\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>Technically speaking, patients don't own their medical record. Their doctors do.\u003c/p>\n\u003cp>And that has led to much of the complications around patient data rights.\u003c/p>\n\u003cp>In the policy world, questions often arise like, who owns the medical record data if a patient has multiple doctors? And who has the right to delete it or bar electronic access? And as patients start generating medical information from the latest apps and devices, will they own that -- or would the developer?\u003c/p>\n\u003cp>Moreover, it still remains a contested issue about which parties or groups are responsible for educating patients about the value of access to their medical record. Some have pointed the finger at patient advocates; some say it's the responsibility of the physician or the federal government.\u003c/p>\n\u003cp>But setbacks aside, some industry insiders are hopeful that the health sector will find answers in the coming years, \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/13/startups-entrepreneurs-try-to-solve-medical-records-debacle/\">particularly given the recent outpouring of patient-focused tools\u003c/a> from Silicon Valley and other tech hubs.\u003c/p>\n\u003cp>\"It gets a little better every year. It's baby steps in health IT,\" said Dan Haley, a regulatory affairs expert at electronic health record company \u003ca href=\"http://athenahealth.com/\">AthenaHealth\u003c/a>.\u003c/p>\n\u003cp>But for her part, Hallisy has no intention of sitting back and waiting for change:\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>\"This means the kind of work I do is more important than ever,\" she said. \"Medicine is changing. It could be interactive and collaborative, but we need the public's help.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/2519/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death","authors":["3252"],"categories":["futureofyou_1060"],"tags":["futureofyou_303","futureofyou_298","futureofyou_299","futureofyou_302","futureofyou_301","futureofyou_305","futureofyou_307","futureofyou_306","futureofyou_297","futureofyou_80","futureofyou_296","futureofyou_304","futureofyou_300"],"featImg":"futureofyou_2569","label":"futureofyou"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? 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. Michel Martin hosts on the weekends.","airtime":"MON-FRI 1pm-2pm, 4:30pm-6:30pm\u003cbr />SAT-SUN 5pm-6pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/All-Things-Considered-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/all-things-considered/","meta":{"site":"news","source":"npr"},"link":"/radio/program/all-things-considered"},"american-suburb-podcast":{"id":"american-suburb-podcast","title":"American Suburb: The Podcast","tagline":"The flip side of gentrification, told through one town","info":"Gentrification is changing cities across America, forcing people from neighborhoods they have long called home. Call them the displaced. Now those priced out of the Bay Area are looking for a better life in an unlikely place. American Suburb follows this migration to one California town along the Delta, 45 miles from San Francisco. 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. As a non-partisan forum, The Club brings to the public airwaves diverse viewpoints on important topics. The Club's weekly radio broadcast - the oldest in the U.S., dating back to 1924 - is carried across the nation on public radio stations and is now podcasting. Our website archive features audio of our recent programs, as well as selected speeches from our long and distinguished history. This podcast feed is usually updated twice a week and is always un-edited.","airtime":"THU 10pm, FRI 1am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Commonwealth-Club-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.commonwealthclub.org/podcasts","meta":{"site":"news","source":"Commonwealth Club of California"},"link":"/radio/program/commonwealth-club","subscribe":{"apple":"https://itunes.apple.com/us/podcast/commonwealth-club-of-california-podcast/id976334034?mt=2","google":"https://podcasts.google.com/feed/aHR0cDovL3d3dy5jb21tb253ZWFsdGhjbHViLm9yZy9hdWRpby9wb2RjYXN0L3dlZWtseS54bWw","tuneIn":"https://tunein.com/radio/Commonwealth-Club-of-California-p1060/"}},"considerthis":{"id":"considerthis","title":"Consider This","tagline":"Make sense of the day","info":"Make sense of the day. Every weekday afternoon, Consider This helps you consider the major stories of the day in less than 15 minutes, featuring the reporting and storytelling resources of NPR. Plus, KQED’s Bianca Taylor brings you the local KQED news you need to know.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Consider-This-Podcast-Tile-703x703-1.jpg","imageAlt":"Consider This from NPR and KQED","officialWebsiteLink":"/podcasts/considerthis","meta":{"site":"news","source":"kqed","order":"7"},"link":"/podcasts/considerthis","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1503226625?mt=2&at=11l79Y&ct=nprdirectory","npr":"https://rpb3r.app.goo.gl/coronavirusdaily","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM1NS9wb2RjYXN0LnhtbA","spotify":"https://open.spotify.com/show/3Z6JdCS2d0eFEpXHKI6WqH"}},"forum":{"id":"forum","title":"Forum","tagline":"The conversation starts here","info":"KQED’s live call-in program discussing local, state, national and international issues, as well as in-depth interviews.","airtime":"MON-FRI 9am-11am, 10pm-11pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Forum-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED Forum with Mina Kim and Alexis Madrigal","officialWebsiteLink":"/forum","meta":{"site":"news","source":"kqed","order":"8"},"link":"/forum","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/kqeds-forum/id73329719","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM5NTU3MzgxNjMz","npr":"https://www.npr.org/podcasts/432307980/forum","stitcher":"https://www.stitcher.com/podcast/kqedfm-kqeds-forum-podcast","rss":"https://feeds.megaphone.fm/KQINC9557381633"}},"freakonomics-radio":{"id":"freakonomics-radio","title":"Freakonomics Radio","info":"Freakonomics Radio is a one-hour award-winning podcast and public-radio project hosted by Stephen Dubner, with co-author Steve Levitt as a regular guest. 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