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She was previously with Reuters, covering digital health and Apple and before that, she reported for Venture Beat. Christina was born and raised in London and has graduate degrees from University of London and the Stanford School of Journalism. Farr’s work has appeared in a variety of publications, including the New York Times, the Daily Telegraph, the Bay Citizen and SFGate.com. She has appeared as a featured expert on NBC, ABC and Reuters TV, among others, and frequently speaks at health and technology conferences. 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They're collecting what you post on social media, whether you're behind on your bills, what you order online. Then they feed this information into complicated computer algorithms that spit out predictions about how much your health care could cost them.\u003c/p>\n\u003cp>Are you a woman who recently changed your name? You could be newly married and have a pricey pregnancy pending. Or maybe you're stressed and anxious from a recent divorce. That, too, the computer models predict, may run up your medical bills.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Are you a woman who has purchased plus-size clothing? You're considered at risk of depression. Mental health care can be expensive.[contextly_sidebar id=\"bDoTI0AqbPZA0QggUW6RBxclSpZhPjsp\"]\u003c/p>\n\u003cp>Low-income and a minority? That means, the data brokers say, you are more likely to live in a dilapidated and dangerous neighborhood, increasing your health risks.\u003c/p>\n\u003cp>\"We sit on oceans of data,\" said Eric McCulley, director of strategic solutions for \u003ca href=\"https://risk.lexisnexis.com/insurance\" target=\"_blank\" rel=\"noopener\">LexisNexis Risk Solutions\u003c/a>, during a conversation at the data firm's booth. And he isn't apologetic about using it. \"The fact is, our data is in the public domain,\" he said. \"We didn't put it out there.\"\u003c/p>\n\u003cp>Insurers contend that they use the information to spot health issues in their clients — and flag them so they get services they need. And companies like LexisNexis say the data shouldn't be used to set prices. But as a research scientist from one company told me: \"I can't say it hasn't happened.\"\u003c/p>\n\u003cp>At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry's data gathering runs counter to its touted, and federally required, allegiance to patients' medical privacy. The \u003ca href=\"https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html\" target=\"_blank\" rel=\"noopener\">Health Insurance Portability and Accountability Act\u003c/a>, or HIPAA, only protects medical information.\u003c/p>\n\u003cp>\"We have a health privacy machine that's in crisis,\" said Frank Pasquale, a professor at the University of Maryland Carey School of Law who specializes in issues related to machine learning and algorithms. \"We have a law that only covers one source of health information. They are rapidly developing another source.\"\u003c/p>\n\u003cp>Patient advocates warn that using unverified, error-prone \"lifestyle\" data to make medical assumptions could lead insurers to improperly price plans — for instance, raising rates based on false information — or discriminate against anyone tagged as high cost. And, they say, the use of the data raises thorny questions that should be debated publicly, such as: Should a person's rates be raised because algorithms say they are more likely to run up medical bills? Such questions would be moot in Europe, where a strict law took effect in May that bans trading in personal data.[contextly_sidebar id=\"d5hHSDi3Hs2EqOb5p8wPiO2juNTZPrbB\"]\u003c/p>\n\u003cp>This year, \u003ca href=\"https://www.propublica.org/series/the-health-insurance-hustle\" target=\"_blank\" rel=\"noopener\">ProPublica and NPR are investigating\u003c/a> the various tactics the health insurance industry uses to maximize its profits. Understanding these strategies is important because patients — through taxes, cash payments and insurance premiums — are the ones funding the entire health care system. Yet the industry's bewildering web of strategies and inside deals often has little to do with patients' needs. As the series' \u003ca href=\"https://www.propublica.org/article/why-your-health-insurer-does-not-care-about-your-big-bills\" target=\"_blank\" rel=\"noopener\">first story\u003c/a> showed, contrary to popular belief, lower bills aren't health insurers' top priority.\u003c/p>\n\u003cp>Inside the San Diego Convention Center, there were few qualms about the way insurance companies were mining Americans' lives for information — or what they planned to do with the data.\u003c/p>\n\u003cp>\u003cstrong>Linking Health Costs to Personal Data\u003c/strong>\u003c/p>\n\u003cp>The sprawling convention center was a balmy draw for one of America's Health Insurance Plans' marquee gatherings. Insurance executives and managers wandered through the exhibit hall, sampling chocolate-covered strawberries, champagne and other delectables designed to encourage deal-making.\u003c/p>\n\u003cp>Up front, the prime real estate belonged to the big guns in health data: The booths of Optum, IBM Watson Health and LexisNexis stretched toward the ceiling, with flat-screen monitors and some comfy seating. (NPR collaborates with IBM Watson Health on national polls about consumer health topics.)\u003c/p>\n\u003cp>To understand the scope of what they were offering, consider Optum. The company, owned by the massive UnitedHealth Group, has collected the medical diagnoses, tests, prescriptions, costs and socioeconomic data of 150 million Americans going back to 1993, according to its marketing materials.(UnitedHealth Group provides financial support to NPR.)\u003c/p>\n\u003cp>The company says it uses the information to link patients' medical outcomes and costs to details like their level of education, net worth, family structure and race. An Optum spokesman said the socioeconomic data is de-identified and is not used for pricing health plans.\u003c/p>\n\u003cp>Optum's marketing materials also boast that it now has access to even more. In 2016, the company filed a patent application to gather what people share on platforms like Facebook and Twitter, and to link this material to the person's clinical and payment information. A company spokesman said in an email that the patent application never went anywhere. But the company's current marketing materials say it combines claims and clinical information with social media interactions.\u003c/p>\n\u003cp>I had a lot of questions about this and first reached out to Optum in May, but the company didn't connect me with any of its experts as promised. At the conference, Optum salespeople said they weren't allowed to talk to me about how the company uses this information.\u003c/p>\n\u003cp>It isn't hard to understand the appeal of all this data to insurers. Merging information from data brokers with people's clinical and payment records is a no-brainer if you overlook potential patient concerns. Electronic medical records now make it easy for insurers to analyze massive amounts of information and combine it with the personal details scooped up by data brokers.\u003c/p>\n\u003cp>It also makes sense given the shifts in how providers are getting paid. Doctors and hospitals have typically been paid based on the quantity of care they provide. But the industry is moving toward paying them in lump sums for caring for a patient, or for an event, like a knee surgery. In those cases, the medical providers can profit more when patients stay healthy. More money at stake means more interest in the social factors that might affect a patient's health.\u003c/p>\n\u003cp>Some insurance companies are already using socioeconomic data to help patients get appropriate care, such as programs to help patients with chronic diseases stay healthy. Studies show social and economic aspects of people's lives play an important role in their health. Knowing these personal details can help them identify those who may need help paying for medication or help getting to the doctor.\u003c/p>\n\u003cp>But patient advocates are skeptical that health insurers have altruistic designs on people's personal information.\u003c/p>\n\u003cp>The industry has a history of boosting profits by signing up healthy people and finding ways to avoid sick people — called \"cherry-picking\" and \"lemon-dropping,\" experts say.\u003c/p>\n\u003cp>Among the classic examples: A company was accused of putting its enrollment office on the third floor of a building without an elevator, so only healthy patients could make the trek to sign up. Another tried to appeal to spry seniors by holding square dances.\u003c/p>\n\u003cp>The Affordable Care Act prohibits insurers from denying people coverage based on pre-existing health conditions or charging sick people more for individual or small group plans. But experts said patients' personal information could still be used for marketing, and to assess risks and determine the prices of certain plans. And the Trump administration is promoting short-term health plans, which do allow insurers to deny coverage to sick patients.\u003c/p>\n\u003cp>Robert Greenwald, faculty director of Harvard Law School's Center for Health Law and Policy Innovation, said insurance companies still cherry-pick, but now they're subtler. The center analyzes health insurance plans to see if they discriminate. He said insurers will do things like failing to include enough information about which drugs a plan covers, which pushes sick people who need specific medications elsewhere. Or they may change the things a plan covers, or how much a patient has to pay for a type of care, after a patient has enrolled. Or, Greenwald added, they might exclude or limit certain types of providers from their networks — like those who have skill caring for patients with HIV or hepatitis C.\u003c/p>\n\u003cp>If there were concerns that personal data might be used to cherry-pick or lemon-drop, they weren't raised at the conference.\u003c/p>\n\u003cp>At the IBM Watson Health booth, Kevin Ruane, a senior consulting scientist, told me that the company surveys 80,000 Americans a year to assess lifestyle, attitudes and behaviors that could relate to health care. Participants are asked whether they trust their doctor, have financial problems, go online, or own a Fitbit and similar questions. The responses of hundreds of adjacent households are analyzed together to identify social and economic factors for an area.\u003c/p>\n\u003cp>Ruane said he has used IBM Watson Health's socioeconomic analysis to help insurance companies assess a potential market. The ACA increased the value of such assessments, experts say, because companies often don't know the medical history of people seeking coverage. A region with too many sick people, or with patients who don't take care of themselves, might not be worth the risk.\u003c/p>\n\u003cp>Ruane acknowledged that the information his company gathers may not be accurate for every person. \"We talk to our clients and tell them to be careful about this,\" he said. \"Use it as a data insight. But it's not necessarily a fact.\"\u003c/p>\n\u003cp>In a separate conversation, a salesman from a different company joked about the potential for error. \"God forbid you live on the wrong street these days,\" he said. \"You're going to get lumped in with a lot of bad things.\"\u003c/p>\n\u003cp>The LexisNexis booth was emblazoned with the slogan \"Data. Insight. Action.\" The company said it uses 442 nonmedical personal attributes to predict a person's medical costs. Its cache includes more than 78 billion records from more than 10,000 public and proprietary sources, including people's cellphone numbers, criminal records, bankruptcies, property records, neighborhood safety and more. The information is used to predict patients' health risks and costs in eight areas, including how often they are likely to visit emergency rooms, their total cost, their pharmacy costs, their motivation to stay healthy and their stress levels.\u003c/p>\n\u003cp>People who downsize their homes tend to have higher health care costs, the company says. As do those whose parents didn't finish high school. Patients who own more valuable homes are less likely to land back in the hospital within 30 days of their discharge. The company says it has validated its scores against insurance claims and clinical data. But it won't share its methods and hasn't published the work in peer-reviewed journals.\u003c/p>\n\u003cp>McCulley, LexisNexis' director of strategic solutions, said predictions made by the algorithms about patients are based on the combination of the personal attributes. He gave a hypothetical example: A high school dropout who had a recent income loss and doesn't have a relative nearby might have higher-than-expected health costs.\u003c/p>\n\u003cp>But couldn't that same type of person be healthy?\u003c/p>\n\u003cp>\"Sure,\" McCulley said, with no apparent dismay at the possibility that the predictions could be wrong.\u003c/p>\n\u003cp>McCulley and others at LexisNexis insist the scores are only used to help patients get the care they need and not to determine how much someone would pay for their health insurance. The company cited three different federal laws that restricted them and their clients from using the scores in that way. But privacy experts said none of the laws cited by the company bar the practice. The company backed off the assertions when I pointed that the laws did not seem to apply.\u003c/p>\n\u003cp>LexisNexis officials also said the company's contracts expressly prohibit using the analysis to help price insurance plans. They would not provide a contract. But I knew that in at least one instance a company was already testing whether the scores could be used as a pricing tool.\u003c/p>\n\u003cp>Before the conference, I'd seen a press release announcing that the largest health actuarial firm in the world, Milliman, was now using the LexisNexis scores.\u003c/p>\n\u003cp>I tracked down Marcos Dachary, who works in business development for Milliman. Actuaries calculate health care risks and help set the price of premiums for insurers. I asked Dachary if Milliman was using the LexisNexis scores to price health plans and he said: \"There could be an opportunity.\"\u003c/p>\n\u003cp>The scores could allow an insurance company to assess the risks posed by individual patients and make adjustments to protect themselves from losses, he said. For example, he said, the company could raise premiums or revise contracts with providers.\u003c/p>\n\u003cp>It's too early to tell whether the LexisNexis scores will actually be useful for pricing, he said. But he was excited about the possibilities. \"One thing about social determinants data – it piques your mind,\" he said.\u003c/p>\n\u003cp>Dachary acknowledged the scores could also be used to discriminate. Others, he said, have raised that concern. As much as there could be positive potential, he said, \"there could also be negative potential.\"\u003c/p>\n\u003cp>\u003cstrong>Erroneous Inferences From Group Data\u003c/strong>\u003c/p>\n\u003cp>It's that negative potential that still bothers data analyst Erin Kaufman, who left the health insurance industry in January. The 35-year-old from Atlanta had earned her doctorate in public health because she wanted to help people, but one day at Aetna, her boss told her to work with a new data set.\u003c/p>\n\u003cp>To her surprise, the company had obtained personal information from a data broker on millions of Americans. The data contained each person's habits and hobbies, like whether they owned a gun, and if so, what type, she said. It included whether they had magazine subscriptions, liked to ride bikes or run marathons. It had hundreds of personal details about each person.\u003c/p>\n\u003cp>The Aetna data team merged the data with the information it had on patients it insured. The goal was to see how people's personal interests and hobbies might relate to their health care costs.\u003c/p>\n\u003cp>But Kaufman said it felt wrong: The information about the people who knitted or crocheted made her think of her grandmother. And the details about individuals who liked camping made her think of herself. What business did the insurance company have looking at this information? \"It was a data set that really dug into our clients' lives,\" she said. \"No one gave anyone permission to do this.\"\u003c/p>\n\u003cp>\u003ca href=\"https://www.documentcloud.org/documents/4600083-Aetna-Statement.html\">In a statement\u003c/a>, Aetna said it uses consumer marketing information to supplement its claims and clinical information. The combined data helps predict the risk of repeat emergency room visits or hospital admissions. The information is used to reach out to members and help them and plays no role in pricing plans or underwriting, the statement said.\u003c/p>\n\u003cp>Kaufman said she had concerns about the accuracy of drawing inferences about an individual's health from an analysis of a group of people with similar traits. Health scores generated from arrest records, homeownership and similar material may be wrong, she said.\u003c/p>\n\u003cp>Pam Dixon, executive director of the World Privacy Forum, a nonprofit that advocates for privacy in the digital age, shares Kaufman's concerns. She points to a study by the analytics company SAS, which worked in 2012 with an unnamed major health insurance company to predict a person's health care costs using 1,500 data elements, including the investments and types of cars people owned.\u003c/p>\n\u003cp>The SAS study said higher health care costs could be predicted by looking at things like ethnicity, watching TV and mail-order purchases.\u003c/p>\n\u003cp>\"I find that enormously offensive as a list,\" Dixon said. \"This is not health data. This is inferred data.\"\u003c/p>\n\u003cp>Data scientist Cathy O'Neil said drawing conclusions about health risks on such data could lead to a bias against some poor people. It would be easy to infer they are prone to costly illnesses based on their backgrounds and living conditions, said O'Neil, author of the book \u003cem>Weapons of Math Destruction,\u003c/em> which looked at how algorithms can increase inequality. That could lead to poor people being charged more, making it harder for them to get the care they need, she said. Employers, she said, could even decide not to hire people with data points that could indicate high medical costs in the future.\u003c/p>\n\u003cp>O'Neil said the companies should also measure how the scores might discriminate against the poor, sick or minorities.\u003c/p>\n\u003cp>American policymakers could do more to protect people's information, experts said. In the United States, companies can harvest personal data unless a specific law bans it, although California just passed legislation that could create restrictions, said William McGeveran, a professor at the University of Minnesota Law School. Europe, in contrast, passed a strict law called the \u003ca href=\"https://ec.europa.eu/info/law/law-topic/data-protection/reform/what-does-general-data-protection-regulation-gdpr-govern_en\" target=\"_blank\" rel=\"noopener\">General Data Protection Regulation\u003c/a>, which went into effect in May.\u003c/p>\n\u003cp>\"In Europe, data protection is a constitutional right,\" McGeveran said.\u003c/p>\n\u003cp>Pasquale, the University of Maryland law professor, said health scores should be treated like credit scores. Federal law gives people the right to know their credit scores and how they're calculated. If people are going to be rated by whether they listen to sad songs on Spotify or look up information about AIDS online, they should know, Pasquale said. \"The risk of improper use is extremely high,\" he said. \"And data scores are not properly vetted and validated and available for scrutiny.\"\u003c/p>\n\u003cp>\u003cstrong>A Creepy Walk Down Memory Lane \u003c/strong>\u003c/p>\n\u003cp>As I reported this story I wondered how the data vendors might be using my personal information to score my potential health costs. So, I filled out \u003ca href=\"https://personalreports.lexisnexis.com/access_your_full_file_disclosure.jsp\" target=\"_blank\" rel=\"noopener\">a request on the LexisNexis website\u003c/a> for the company to send me some of the personal information it has on me. A week later, a somewhat creepy, 182-page walk down memory lane arrived in the mail. Federal law only requires the company to provide a subset of the information it collected about me. So that's all I got.\u003c/p>\n\u003cp>LexisNexis had captured details about my life going back 25 years, many that I'd forgotten. It had my phone numbers going back decades and my home addresses going back to my childhood in Golden, Colo. Each location had a field to show whether the address was \"high risk.\" Mine were all blank. The company also collects records of any liens and criminal activity, which, thankfully, I didn't have.\u003c/p>\n\u003cp>My report was boring, which isn't a surprise. I've lived a middle-class life and grown up in good neighborhoods. But it made me wonder: What if I had lived in \"high-risk\" neighborhoods? Could that ever be used by insurers to jack up my rates — or to avoid me altogether?\u003c/p>\n\u003cp>I wanted to see more. If LexisNexis had health risk scores on me, I wanted to see how they were calculated and, more importantly, whether they were accurate. But the company told me that if it had calculated my scores it would have done so on behalf of its client, my insurance company. So, I couldn't have them.\u003c/p>\n\u003chr>\n\u003cp>\u003cem>ProPublica Senior Research Fellow Claire Perlman contributed to this story. \u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>ProPublica is a nonprofit newsroom based in New York. Sign up to get ProPublica's \u003c/em>\u003ca href=\"https://go.propublica.org/bigstorynewsletter-20180717\" target=\"_blank\" rel=\"noopener\">Big Story newsletter\u003c/a>\u003cem> to receive stories like this one in your inbox as soon as they are published. \u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 ProPublica. To see more, visit \u003ca>ProPublica\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Health+Insurers+Are+Vacuuming+Up+Details+About+You+%E2%80%94+And+It+Could+Raise+Your+Rates+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Without scrutiny, insurers and data brokers are predicting your health costs based on public data about things like race, marital status, your TV consumption and even if you buy plus-size clothing.","status":"publish","parent":0,"modified":1532039385,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":70,"wordCount":3374},"headData":{"title":"Health Insurers Are Vacuuming Up Details About You — And It Could Raise Your Rates | KQED","description":"Without scrutiny, insurers and data brokers are predicting your health costs based on public data about things like race, marital status, your TV consumption and even if you buy plus-size clothing.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"443506 https://ww2.kqed.org/futureofyou/?p=443506","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/07/20/health-insurers-are-vacuuming-up-details-about-you-and-it-could-raise-your-rates/","disqusTitle":"Health Insurers Are Vacuuming Up Details About You — And It Could Raise Your Rates","source":"Health","nprByline":"Marshall Allen, NPR Morning Edition","nprImageAgency":"Justin Volz for ProPublica","nprStoryId":"629441555","nprApiLink":"http://api.npr.org/query?id=629441555&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/07/17/629441555/health-insurers-are-vacuuming-up-details-about-you-and-it-could-raise-your-rates?ft=nprml&f=629441555","nprRetrievedStory":"1","nprPubDate":"Thu, 19 Jul 2018 07:25:00 -0400","nprStoryDate":"Tue, 17 Jul 2018 05:00:00 -0400","nprLastModifiedDate":"Thu, 19 Jul 2018 07:25:45 -0400","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/me/2018/07/20180717_me_health_insurers_are_vacuuming_up_details_about_you_and_it_could_raise_your_rates_.mp3?orgId=199135797&topicId=1128&d=236&p=3&story=629441555&ft=nprml&f=629441555","nprAudioM3u":"http://api.npr.org/m3u/1629703879-4b01b8.m3u?orgId=199135797&topicId=1128&d=236&p=3&story=629441555&ft=nprml&f=629441555","path":"/futureofyou/443506/health-insurers-are-vacuuming-up-details-about-you-and-it-could-raise-your-rates","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/me/2018/07/20180717_me_health_insurers_are_vacuuming_up_details_about_you_and_it_could_raise_your_rates_.mp3?orgId=199135797&topicId=1128&d=236&p=3&story=629441555&ft=nprml&f=629441555","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>To an outsider, the fancy booths at a June health insurance industry gathering in San Diego, Calif., aren't very compelling: a handful of companies pitching \"lifestyle\" data and salespeople touting jargony phrases like \"social determinants of health.\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>But dig deeper and the implications of what they're selling might give many patients pause: a future in which everything you do — the things you buy, the food you eat, the time you spend watching TV — may help determine how much you pay for health insurance.\u003c/p>\n\u003cp>With little public scrutiny, the health insurance industry has joined forces with data brokers to vacuum up personal details about hundreds of millions of Americans, including, odds are, many readers of this story.\u003c/p>\n\u003cp>The companies are tracking your race, education level, TV habits, marital status, net worth. They're collecting what you post on social media, whether you're behind on your bills, what you order online. Then they feed this information into complicated computer algorithms that spit out predictions about how much your health care could cost them.\u003c/p>\n\u003cp>Are you a woman who recently changed your name? You could be newly married and have a pricey pregnancy pending. Or maybe you're stressed and anxious from a recent divorce. That, too, the computer models predict, may run up your medical bills.\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>Are you a woman who has purchased plus-size clothing? You're considered at risk of depression. Mental health care can be expensive.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Low-income and a minority? That means, the data brokers say, you are more likely to live in a dilapidated and dangerous neighborhood, increasing your health risks.\u003c/p>\n\u003cp>\"We sit on oceans of data,\" said Eric McCulley, director of strategic solutions for \u003ca href=\"https://risk.lexisnexis.com/insurance\" target=\"_blank\" rel=\"noopener\">LexisNexis Risk Solutions\u003c/a>, during a conversation at the data firm's booth. And he isn't apologetic about using it. \"The fact is, our data is in the public domain,\" he said. \"We didn't put it out there.\"\u003c/p>\n\u003cp>Insurers contend that they use the information to spot health issues in their clients — and flag them so they get services they need. And companies like LexisNexis say the data shouldn't be used to set prices. But as a research scientist from one company told me: \"I can't say it hasn't happened.\"\u003c/p>\n\u003cp>At a time when every week brings a new privacy scandal and worries abound about the misuse of personal information, patient advocates and privacy scholars say the insurance industry's data gathering runs counter to its touted, and federally required, allegiance to patients' medical privacy. The \u003ca href=\"https://www.hhs.gov/hipaa/for-individuals/guidance-materials-for-consumers/index.html\" target=\"_blank\" rel=\"noopener\">Health Insurance Portability and Accountability Act\u003c/a>, or HIPAA, only protects medical information.\u003c/p>\n\u003cp>\"We have a health privacy machine that's in crisis,\" said Frank Pasquale, a professor at the University of Maryland Carey School of Law who specializes in issues related to machine learning and algorithms. \"We have a law that only covers one source of health information. They are rapidly developing another source.\"\u003c/p>\n\u003cp>Patient advocates warn that using unverified, error-prone \"lifestyle\" data to make medical assumptions could lead insurers to improperly price plans — for instance, raising rates based on false information — or discriminate against anyone tagged as high cost. And, they say, the use of the data raises thorny questions that should be debated publicly, such as: Should a person's rates be raised because algorithms say they are more likely to run up medical bills? Such questions would be moot in Europe, where a strict law took effect in May that bans trading in personal data.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>This year, \u003ca href=\"https://www.propublica.org/series/the-health-insurance-hustle\" target=\"_blank\" rel=\"noopener\">ProPublica and NPR are investigating\u003c/a> the various tactics the health insurance industry uses to maximize its profits. Understanding these strategies is important because patients — through taxes, cash payments and insurance premiums — are the ones funding the entire health care system. Yet the industry's bewildering web of strategies and inside deals often has little to do with patients' needs. As the series' \u003ca href=\"https://www.propublica.org/article/why-your-health-insurer-does-not-care-about-your-big-bills\" target=\"_blank\" rel=\"noopener\">first story\u003c/a> showed, contrary to popular belief, lower bills aren't health insurers' top priority.\u003c/p>\n\u003cp>Inside the San Diego Convention Center, there were few qualms about the way insurance companies were mining Americans' lives for information — or what they planned to do with the data.\u003c/p>\n\u003cp>\u003cstrong>Linking Health Costs to Personal Data\u003c/strong>\u003c/p>\n\u003cp>The sprawling convention center was a balmy draw for one of America's Health Insurance Plans' marquee gatherings. Insurance executives and managers wandered through the exhibit hall, sampling chocolate-covered strawberries, champagne and other delectables designed to encourage deal-making.\u003c/p>\n\u003cp>Up front, the prime real estate belonged to the big guns in health data: The booths of Optum, IBM Watson Health and LexisNexis stretched toward the ceiling, with flat-screen monitors and some comfy seating. (NPR collaborates with IBM Watson Health on national polls about consumer health topics.)\u003c/p>\n\u003cp>To understand the scope of what they were offering, consider Optum. The company, owned by the massive UnitedHealth Group, has collected the medical diagnoses, tests, prescriptions, costs and socioeconomic data of 150 million Americans going back to 1993, according to its marketing materials.(UnitedHealth Group provides financial support to NPR.)\u003c/p>\n\u003cp>The company says it uses the information to link patients' medical outcomes and costs to details like their level of education, net worth, family structure and race. An Optum spokesman said the socioeconomic data is de-identified and is not used for pricing health plans.\u003c/p>\n\u003cp>Optum's marketing materials also boast that it now has access to even more. In 2016, the company filed a patent application to gather what people share on platforms like Facebook and Twitter, and to link this material to the person's clinical and payment information. A company spokesman said in an email that the patent application never went anywhere. But the company's current marketing materials say it combines claims and clinical information with social media interactions.\u003c/p>\n\u003cp>I had a lot of questions about this and first reached out to Optum in May, but the company didn't connect me with any of its experts as promised. At the conference, Optum salespeople said they weren't allowed to talk to me about how the company uses this information.\u003c/p>\n\u003cp>It isn't hard to understand the appeal of all this data to insurers. Merging information from data brokers with people's clinical and payment records is a no-brainer if you overlook potential patient concerns. Electronic medical records now make it easy for insurers to analyze massive amounts of information and combine it with the personal details scooped up by data brokers.\u003c/p>\n\u003cp>It also makes sense given the shifts in how providers are getting paid. Doctors and hospitals have typically been paid based on the quantity of care they provide. But the industry is moving toward paying them in lump sums for caring for a patient, or for an event, like a knee surgery. In those cases, the medical providers can profit more when patients stay healthy. More money at stake means more interest in the social factors that might affect a patient's health.\u003c/p>\n\u003cp>Some insurance companies are already using socioeconomic data to help patients get appropriate care, such as programs to help patients with chronic diseases stay healthy. Studies show social and economic aspects of people's lives play an important role in their health. Knowing these personal details can help them identify those who may need help paying for medication or help getting to the doctor.\u003c/p>\n\u003cp>But patient advocates are skeptical that health insurers have altruistic designs on people's personal information.\u003c/p>\n\u003cp>The industry has a history of boosting profits by signing up healthy people and finding ways to avoid sick people — called \"cherry-picking\" and \"lemon-dropping,\" experts say.\u003c/p>\n\u003cp>Among the classic examples: A company was accused of putting its enrollment office on the third floor of a building without an elevator, so only healthy patients could make the trek to sign up. Another tried to appeal to spry seniors by holding square dances.\u003c/p>\n\u003cp>The Affordable Care Act prohibits insurers from denying people coverage based on pre-existing health conditions or charging sick people more for individual or small group plans. But experts said patients' personal information could still be used for marketing, and to assess risks and determine the prices of certain plans. And the Trump administration is promoting short-term health plans, which do allow insurers to deny coverage to sick patients.\u003c/p>\n\u003cp>Robert Greenwald, faculty director of Harvard Law School's Center for Health Law and Policy Innovation, said insurance companies still cherry-pick, but now they're subtler. The center analyzes health insurance plans to see if they discriminate. He said insurers will do things like failing to include enough information about which drugs a plan covers, which pushes sick people who need specific medications elsewhere. Or they may change the things a plan covers, or how much a patient has to pay for a type of care, after a patient has enrolled. Or, Greenwald added, they might exclude or limit certain types of providers from their networks — like those who have skill caring for patients with HIV or hepatitis C.\u003c/p>\n\u003cp>If there were concerns that personal data might be used to cherry-pick or lemon-drop, they weren't raised at the conference.\u003c/p>\n\u003cp>At the IBM Watson Health booth, Kevin Ruane, a senior consulting scientist, told me that the company surveys 80,000 Americans a year to assess lifestyle, attitudes and behaviors that could relate to health care. Participants are asked whether they trust their doctor, have financial problems, go online, or own a Fitbit and similar questions. The responses of hundreds of adjacent households are analyzed together to identify social and economic factors for an area.\u003c/p>\n\u003cp>Ruane said he has used IBM Watson Health's socioeconomic analysis to help insurance companies assess a potential market. The ACA increased the value of such assessments, experts say, because companies often don't know the medical history of people seeking coverage. A region with too many sick people, or with patients who don't take care of themselves, might not be worth the risk.\u003c/p>\n\u003cp>Ruane acknowledged that the information his company gathers may not be accurate for every person. \"We talk to our clients and tell them to be careful about this,\" he said. \"Use it as a data insight. But it's not necessarily a fact.\"\u003c/p>\n\u003cp>In a separate conversation, a salesman from a different company joked about the potential for error. \"God forbid you live on the wrong street these days,\" he said. \"You're going to get lumped in with a lot of bad things.\"\u003c/p>\n\u003cp>The LexisNexis booth was emblazoned with the slogan \"Data. Insight. Action.\" The company said it uses 442 nonmedical personal attributes to predict a person's medical costs. Its cache includes more than 78 billion records from more than 10,000 public and proprietary sources, including people's cellphone numbers, criminal records, bankruptcies, property records, neighborhood safety and more. The information is used to predict patients' health risks and costs in eight areas, including how often they are likely to visit emergency rooms, their total cost, their pharmacy costs, their motivation to stay healthy and their stress levels.\u003c/p>\n\u003cp>People who downsize their homes tend to have higher health care costs, the company says. As do those whose parents didn't finish high school. Patients who own more valuable homes are less likely to land back in the hospital within 30 days of their discharge. The company says it has validated its scores against insurance claims and clinical data. But it won't share its methods and hasn't published the work in peer-reviewed journals.\u003c/p>\n\u003cp>McCulley, LexisNexis' director of strategic solutions, said predictions made by the algorithms about patients are based on the combination of the personal attributes. He gave a hypothetical example: A high school dropout who had a recent income loss and doesn't have a relative nearby might have higher-than-expected health costs.\u003c/p>\n\u003cp>But couldn't that same type of person be healthy?\u003c/p>\n\u003cp>\"Sure,\" McCulley said, with no apparent dismay at the possibility that the predictions could be wrong.\u003c/p>\n\u003cp>McCulley and others at LexisNexis insist the scores are only used to help patients get the care they need and not to determine how much someone would pay for their health insurance. The company cited three different federal laws that restricted them and their clients from using the scores in that way. But privacy experts said none of the laws cited by the company bar the practice. The company backed off the assertions when I pointed that the laws did not seem to apply.\u003c/p>\n\u003cp>LexisNexis officials also said the company's contracts expressly prohibit using the analysis to help price insurance plans. They would not provide a contract. But I knew that in at least one instance a company was already testing whether the scores could be used as a pricing tool.\u003c/p>\n\u003cp>Before the conference, I'd seen a press release announcing that the largest health actuarial firm in the world, Milliman, was now using the LexisNexis scores.\u003c/p>\n\u003cp>I tracked down Marcos Dachary, who works in business development for Milliman. Actuaries calculate health care risks and help set the price of premiums for insurers. I asked Dachary if Milliman was using the LexisNexis scores to price health plans and he said: \"There could be an opportunity.\"\u003c/p>\n\u003cp>The scores could allow an insurance company to assess the risks posed by individual patients and make adjustments to protect themselves from losses, he said. For example, he said, the company could raise premiums or revise contracts with providers.\u003c/p>\n\u003cp>It's too early to tell whether the LexisNexis scores will actually be useful for pricing, he said. But he was excited about the possibilities. \"One thing about social determinants data – it piques your mind,\" he said.\u003c/p>\n\u003cp>Dachary acknowledged the scores could also be used to discriminate. Others, he said, have raised that concern. As much as there could be positive potential, he said, \"there could also be negative potential.\"\u003c/p>\n\u003cp>\u003cstrong>Erroneous Inferences From Group Data\u003c/strong>\u003c/p>\n\u003cp>It's that negative potential that still bothers data analyst Erin Kaufman, who left the health insurance industry in January. The 35-year-old from Atlanta had earned her doctorate in public health because she wanted to help people, but one day at Aetna, her boss told her to work with a new data set.\u003c/p>\n\u003cp>To her surprise, the company had obtained personal information from a data broker on millions of Americans. The data contained each person's habits and hobbies, like whether they owned a gun, and if so, what type, she said. It included whether they had magazine subscriptions, liked to ride bikes or run marathons. It had hundreds of personal details about each person.\u003c/p>\n\u003cp>The Aetna data team merged the data with the information it had on patients it insured. The goal was to see how people's personal interests and hobbies might relate to their health care costs.\u003c/p>\n\u003cp>But Kaufman said it felt wrong: The information about the people who knitted or crocheted made her think of her grandmother. And the details about individuals who liked camping made her think of herself. What business did the insurance company have looking at this information? \"It was a data set that really dug into our clients' lives,\" she said. \"No one gave anyone permission to do this.\"\u003c/p>\n\u003cp>\u003ca href=\"https://www.documentcloud.org/documents/4600083-Aetna-Statement.html\">In a statement\u003c/a>, Aetna said it uses consumer marketing information to supplement its claims and clinical information. The combined data helps predict the risk of repeat emergency room visits or hospital admissions. The information is used to reach out to members and help them and plays no role in pricing plans or underwriting, the statement said.\u003c/p>\n\u003cp>Kaufman said she had concerns about the accuracy of drawing inferences about an individual's health from an analysis of a group of people with similar traits. Health scores generated from arrest records, homeownership and similar material may be wrong, she said.\u003c/p>\n\u003cp>Pam Dixon, executive director of the World Privacy Forum, a nonprofit that advocates for privacy in the digital age, shares Kaufman's concerns. She points to a study by the analytics company SAS, which worked in 2012 with an unnamed major health insurance company to predict a person's health care costs using 1,500 data elements, including the investments and types of cars people owned.\u003c/p>\n\u003cp>The SAS study said higher health care costs could be predicted by looking at things like ethnicity, watching TV and mail-order purchases.\u003c/p>\n\u003cp>\"I find that enormously offensive as a list,\" Dixon said. \"This is not health data. This is inferred data.\"\u003c/p>\n\u003cp>Data scientist Cathy O'Neil said drawing conclusions about health risks on such data could lead to a bias against some poor people. It would be easy to infer they are prone to costly illnesses based on their backgrounds and living conditions, said O'Neil, author of the book \u003cem>Weapons of Math Destruction,\u003c/em> which looked at how algorithms can increase inequality. That could lead to poor people being charged more, making it harder for them to get the care they need, she said. Employers, she said, could even decide not to hire people with data points that could indicate high medical costs in the future.\u003c/p>\n\u003cp>O'Neil said the companies should also measure how the scores might discriminate against the poor, sick or minorities.\u003c/p>\n\u003cp>American policymakers could do more to protect people's information, experts said. In the United States, companies can harvest personal data unless a specific law bans it, although California just passed legislation that could create restrictions, said William McGeveran, a professor at the University of Minnesota Law School. Europe, in contrast, passed a strict law called the \u003ca href=\"https://ec.europa.eu/info/law/law-topic/data-protection/reform/what-does-general-data-protection-regulation-gdpr-govern_en\" target=\"_blank\" rel=\"noopener\">General Data Protection Regulation\u003c/a>, which went into effect in May.\u003c/p>\n\u003cp>\"In Europe, data protection is a constitutional right,\" McGeveran said.\u003c/p>\n\u003cp>Pasquale, the University of Maryland law professor, said health scores should be treated like credit scores. Federal law gives people the right to know their credit scores and how they're calculated. If people are going to be rated by whether they listen to sad songs on Spotify or look up information about AIDS online, they should know, Pasquale said. \"The risk of improper use is extremely high,\" he said. \"And data scores are not properly vetted and validated and available for scrutiny.\"\u003c/p>\n\u003cp>\u003cstrong>A Creepy Walk Down Memory Lane \u003c/strong>\u003c/p>\n\u003cp>As I reported this story I wondered how the data vendors might be using my personal information to score my potential health costs. So, I filled out \u003ca href=\"https://personalreports.lexisnexis.com/access_your_full_file_disclosure.jsp\" target=\"_blank\" rel=\"noopener\">a request on the LexisNexis website\u003c/a> for the company to send me some of the personal information it has on me. A week later, a somewhat creepy, 182-page walk down memory lane arrived in the mail. Federal law only requires the company to provide a subset of the information it collected about me. So that's all I got.\u003c/p>\n\u003cp>LexisNexis had captured details about my life going back 25 years, many that I'd forgotten. It had my phone numbers going back decades and my home addresses going back to my childhood in Golden, Colo. Each location had a field to show whether the address was \"high risk.\" Mine were all blank. The company also collects records of any liens and criminal activity, which, thankfully, I didn't have.\u003c/p>\n\u003cp>My report was boring, which isn't a surprise. I've lived a middle-class life and grown up in good neighborhoods. But it made me wonder: What if I had lived in \"high-risk\" neighborhoods? Could that ever be used by insurers to jack up my rates — or to avoid me altogether?\u003c/p>\n\u003cp>I wanted to see more. If LexisNexis had health risk scores on me, I wanted to see how they were calculated and, more importantly, whether they were accurate. But the company told me that if it had calculated my scores it would have done so on behalf of its client, my insurance company. So, I couldn't have them.\u003c/p>\n\u003chr>\n\u003cp>\u003cem>ProPublica Senior Research Fellow Claire Perlman contributed to this story. \u003c/em>\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>ProPublica is a nonprofit newsroom based in New York. Sign up to get ProPublica's \u003c/em>\u003ca href=\"https://go.propublica.org/bigstorynewsletter-20180717\" target=\"_blank\" rel=\"noopener\">Big Story newsletter\u003c/a>\u003cem> to receive stories like this one in your inbox as soon as they are published. \u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 ProPublica. To see more, visit \u003ca>ProPublica\u003c/a>.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Health+Insurers+Are+Vacuuming+Up+Details+About+You+%E2%80%94+And+It+Could+Raise+Your+Rates+&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/443506/health-insurers-are-vacuuming-up-details-about-you-and-it-could-raise-your-rates","authors":["byline_futureofyou_443506"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_301","futureofyou_61","futureofyou_419","futureofyou_562","futureofyou_424"],"featImg":"futureofyou_443507","label":"source_futureofyou_443506"},"futureofyou_443288":{"type":"posts","id":"futureofyou_443288","meta":{"index":"posts_1591205157","site":"futureofyou","id":"443288","score":null,"sort":[1531245659000]},"guestAuthors":[],"slug":"news-organizations-push-for-opioid-data-to-be-made-public","title":"News Organizations Push for Opioid Data to be Made Public","publishDate":1531245659,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>News organizations are pushing for the public release of data detailing the distribution of prescription opioids throughout the U.S., information that could show how drug manufacturers and distributors contributed to the nation’s addiction and overdose crisis.[contextly_sidebar id=\"oFkuCyLuHD6r1DtsAM7gwD9CF2vOQObm\"]\u003c/p>\n\u003cp>Attorneys for The Washington Post and HD Media, which owns The Charleston Gazette-Mail in West Virginia, filed requests Monday in federal court in Cleveland. They are advocating for release of records that the federal Drug Enforcement Agency has turned over as part of lawsuits between hundreds of local governments and the drug industry.\u003c/p>\n\u003cp>Other news organizations, including The Associated Press, also have requested information from the federal opioid distribution database.\u003c/p>\n\u003cp>“Where releasing records would merely bring embarrassment or adverse publicity to a corporation or a governmental agency, the records must be disclosed. In this case, disclosure of the (distribution) data would cause no conceivable harm to patients or other innocent individuals,” Washington Post lawyer Karen Lofton wrote in a court filing Monday. “If anything, their interests would be advanced by the public accountability that would be demanded in the wake of such disclosures.”\u003c/p>\n\u003cp>Drug manufacturers, distributors and the federal government object to making the information public. In a court filing last month, lawyers for the federal government argued that doing so would jeopardize the companies’ trade secrets, criminal investigations and violate state public records laws.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>The database compiles information from the drug industry about the sales and distribution of controlled substances. The government refers to it for law enforcement purposes, although in legal papers it redacted descriptions of how it’s used.\u003c/p>\n\u003cp>A West Virginia judge made some of the data public in 2016. The Gazette-Mail used it to report that 780 million pills flowed into the state of just 1.8 million residents over a six-year period. During that time, more than 1,700 West Virginians died from opioid overdoses.[contextly_sidebar id=\"xvq6HHGRhbjlidwnKbSMejLZnMvvVApf\"]\u003c/p>\n\u003cp>In their filing, lawyers for the Charleston newspaper pointed to that previous decision and the resulting story as an example of why the national distribution data should be released.\u003c/p>\n\u003cp>The information is likely to be key evidence in the litigation over opioids. It’s the only way to trace opioids from manufacturers to distributors to pharmacies, said Paul Farrell Jr., a lead lawyer for plaintiffs suing the drug industry and an advocate of making the data public.\u003c/p>\n\u003cp>“It will identify every pill mill in the country,” he said.\u003c/p>\n\u003cp>The federal government agreed to provide data from its registry for 2006 through 2014 to the parties in the hundreds of lawsuits over the impact of prescription opioids and related illicit drugs. That deal includes restrictions that it can be used only for litigation and law enforcement.[contextly_sidebar id=\"bhpnTcxjlxotKE6ut4pr90uVJZ0rSHLV\"]\u003c/p>\n\u003cp>Cleveland-based U.S. District Judge Dan Polster is overseeing more than 800 lawsuits, most filed by governments, and is trying to get the sides to forge a settlement.\u003c/p>\n\u003cp>If the cases go to trial, it’s likely the distribution data would be presented as evidence. But if there’s a mass settlement, the information may not be revealed.\u003c/p>\n\u003cp>Combined, opioids killed more than 42,000 Americans in 2016.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n","blocks":[],"excerpt":"The information could show how drug manufacturers and distributors contributed to the nation’s addiction and overdose crisis.","status":"publish","parent":0,"modified":1531244444,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":16,"wordCount":540},"headData":{"title":"News Organizations Push for Opioid Data to be Made Public | KQED","description":"The information could show how drug manufacturers and distributors contributed to the nation’s addiction and overdose crisis.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"443288 https://ww2.kqed.org/futureofyou/?p=443288","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/07/10/news-organizations-push-for-opioid-data-to-be-made-public/","disqusTitle":"News Organizations Push for Opioid Data to be Made Public","source":"Health","nprByline":"Geoff Mulvihill\u003cbr />The Associated Press","path":"/futureofyou/443288/news-organizations-push-for-opioid-data-to-be-made-public","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>News organizations are pushing for the public release of data detailing the distribution of prescription opioids throughout the U.S., information that could show how drug manufacturers and distributors contributed to the nation’s addiction and overdose crisis.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Attorneys for The Washington Post and HD Media, which owns The Charleston Gazette-Mail in West Virginia, filed requests Monday in federal court in Cleveland. They are advocating for release of records that the federal Drug Enforcement Agency has turned over as part of lawsuits between hundreds of local governments and the drug industry.\u003c/p>\n\u003cp>Other news organizations, including The Associated Press, also have requested information from the federal opioid distribution database.\u003c/p>\n\u003cp>“Where releasing records would merely bring embarrassment or adverse publicity to a corporation or a governmental agency, the records must be disclosed. In this case, disclosure of the (distribution) data would cause no conceivable harm to patients or other innocent individuals,” Washington Post lawyer Karen Lofton wrote in a court filing Monday. “If anything, their interests would be advanced by the public accountability that would be demanded in the wake of such disclosures.”\u003c/p>\n\u003cp>Drug manufacturers, distributors and the federal government object to making the information public. In a court filing last month, lawyers for the federal government argued that doing so would jeopardize the companies’ trade secrets, criminal investigations and violate state public records laws.\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 database compiles information from the drug industry about the sales and distribution of controlled substances. The government refers to it for law enforcement purposes, although in legal papers it redacted descriptions of how it’s used.\u003c/p>\n\u003cp>A West Virginia judge made some of the data public in 2016. The Gazette-Mail used it to report that 780 million pills flowed into the state of just 1.8 million residents over a six-year period. During that time, more than 1,700 West Virginians died from opioid overdoses.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>In their filing, lawyers for the Charleston newspaper pointed to that previous decision and the resulting story as an example of why the national distribution data should be released.\u003c/p>\n\u003cp>The information is likely to be key evidence in the litigation over opioids. It’s the only way to trace opioids from manufacturers to distributors to pharmacies, said Paul Farrell Jr., a lead lawyer for plaintiffs suing the drug industry and an advocate of making the data public.\u003c/p>\n\u003cp>“It will identify every pill mill in the country,” he said.\u003c/p>\n\u003cp>The federal government agreed to provide data from its registry for 2006 through 2014 to the parties in the hundreds of lawsuits over the impact of prescription opioids and related illicit drugs. That deal includes restrictions that it can be used only for litigation and law enforcement.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Cleveland-based U.S. District Judge Dan Polster is overseeing more than 800 lawsuits, most filed by governments, and is trying to get the sides to forge a settlement.\u003c/p>\n\u003cp>If the cases go to trial, it’s likely the distribution data would be presented as evidence. But if there’s a mass settlement, the information may not be revealed.\u003c/p>\n\u003cp>Combined, opioids killed more than 42,000 Americans in 2016.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp> \u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/443288/news-organizations-push-for-opioid-data-to-be-made-public","authors":["byline_futureofyou_443288"],"categories":["futureofyou_73"],"tags":["futureofyou_828","futureofyou_301","futureofyou_1499","futureofyou_61","futureofyou_938"],"featImg":"futureofyou_443290","label":"source_futureofyou_443288"},"futureofyou_442997":{"type":"posts","id":"futureofyou_442997","meta":{"index":"posts_1591205157","site":"futureofyou","id":"442997","score":null,"sort":[1529685474000]},"guestAuthors":[],"slug":"in-major-privacy-win-supreme-court-says-police-need-warrant-to-track-your-cellphone","title":"In Major Privacy Win, Supreme Court Says Police Need Warrant To Track Your Cellphone","publishDate":1529685474,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>\u003cstrong>Updated 11:02 a.m. ET\u003c/strong>\u003c/p>\n\u003cp>In a major win for privacy rights, the U.S. Supreme Court ruled Friday that police must obtain a search warrant in order to get access to cellphone location information.[contextly_sidebar id=\"EQC4MEPf5TXXa6t5uevcH3tYBoVeB4VU\"]\u003c/p>\n\u003cp>Chief Justice John Roberts wrote the 5-to-4 decision, joining the court's four liberals. The majority declared that the Fourth Amendment guarantees an expectation of privacy and that allowing police to obtain moment-by-moment tracking of an individual's cellphone location is a kind of surveillance that the framers of the Constitution did not want to occur without a search warrant.\u003c/p>\n\u003cp>The chief justice said that this sort of tracking information is akin to wearing an electronic ankle-bracelet monitoring device and that the citizens of the country are protected from that kind of monitoring unless police can show a judge that there is probable cause of a crime that justifies it.\u003c/p>\n\u003cp>He stressed, however, that this is a narrowly focused opinion that leaves intact other precedents when it comes to dealing with financial information, banking and office records.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Roberts noted that the decision also allows for warrantless cell-tower location information searches in emergencies and for national-security purposes.\u003c/p>\n\u003cp>The four dissenters were led by Justice Anthony Kennedy, who was joined by the court's three most conservative members, justices Clarence Thomas, Samuel Alito and Neil Gorsuch. In a rare move, they each filed separate dissents.\u003c/p>\n\u003cp>\u003cstrong>The Background\u003c/strong>\u003c/p>\n\u003cp>The case arose out of a series of armed robberies in 2010 and 2011 — robberies, ironically, aimed at stealing hundreds of new cellphones and selling them for tens of thousands of dollars.\u003c/p>\n\u003cp>When police apprehended some members of the ring, the smaller fish implicated the leader of the ring, Timothy Carpenter. Police got a court order to get access to 127 days of cellphone tracking records for Carpenter and other members of the gang.[contextly_sidebar id=\"zYniDfJm9xPDzfhQYrPVWJPU7aax5DXH\"]\u003c/p>\n\u003cp>Lo and behold, Carpenter's general location information matched the robbery locations, and that information was used to help convict him. Carpenter appealed his conviction to the Supreme Court, contending that the Constitution required that police first obtain a warrant before getting this location information from a service provider.\u003c/p>\n\u003cp>Obtaining a warrant would have required the police to show a judge that they had probable cause to believe the phone records contained evidence of a crime. What the police did instead was obtain a court order under the federal Stored Communications Act, which is easier.\u003c/p>\n\u003cp>\u003cstrong>New Technology Clashes With Old Doctrine\u003c/strong>\u003c/p>\n\u003cp>This was seven years ago, and several smartphone generations ago, too.\u003c/p>\n\u003cp>The information used at Carpenter's trial was not exactly precise. It did not record where he was when he texted or where he was when his phone was not in use.\u003c/p>\n\u003cp>But when he made or received calls, the cellphone towers nearby recorded his general location with an accuracy range of about a half mile to 2 miles. And those calls matched up rather nicely with the vicinity of the robberies.\u003c/p>\n\u003cp>At \u003ca href=\"https://www.npr.org/2017/11/29/567348000/justices-may-impose-new-limits-on-government-access-to-cellphone-data\" target=\"_blank\" rel=\"noopener\">oral arguments in Novembe\u003c/a>r, the justices seemed torn about whether to break with the so-called third party doctrine. Adopted decades ago, that doctrine says that there is no reasonable expectation of privacy when an individual shares information with a third party — for example, the phone company, which knows what telephone numbers the individual calls and receives. Therefore, police do not have to get a search warrant to gain access to those numbers.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But in recent years, the justices have expressed discomfort with that rule of law as applied to the modern digital age, when cellphones carried in a person's pocket can track locations day and night, and when email and text addresses tell a huge amount about an individual's contacts and lifestyle.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=In+Major+Privacy+Win%2C+Supreme+Court+Rules+Police+Need+Warrant+To+Track+Your+Cellphone&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"The Supreme Court ruled police do need a search warrant to obtain cellphone location information routinely collected by wireless providers.","status":"publish","parent":0,"modified":1529685987,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":20,"wordCount":643},"headData":{"title":"In Major Privacy Win, Supreme Court Says Police Need Warrant To Track Your Cellphone | KQED","description":"The Supreme Court ruled police do need a search warrant to obtain cellphone location information routinely collected by wireless providers.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"442997 https://ww2.kqed.org/futureofyou/?p=442997","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/06/22/in-major-privacy-win-supreme-court-says-police-need-warrant-to-track-your-cellphone/","disqusTitle":"In Major Privacy Win, Supreme Court Says Police Need Warrant To Track Your Cellphone","source":"Technology","nprImageCredit":"Carolyn Kaster","nprByline":"Nina Totenberg, NPR","nprImageAgency":"AP","nprStoryId":"605007387","nprApiLink":"http://api.npr.org/query?id=605007387&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/2018/06/22/605007387/supreme-court-rules-police-need-warrant-to-get-location-information-from-cell-to?ft=nprml&f=605007387","nprRetrievedStory":"1","nprPubDate":"Fri, 22 Jun 2018 12:27:00 -0400","nprStoryDate":"Fri, 22 Jun 2018 10:41:00 -0400","nprLastModifiedDate":"Fri, 22 Jun 2018 12:27:44 -0400","path":"/futureofyou/442997/in-major-privacy-win-supreme-court-says-police-need-warrant-to-track-your-cellphone","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>\u003cstrong>Updated 11:02 a.m. ET\u003c/strong>\u003c/p>\n\u003cp>In a major win for privacy rights, the U.S. Supreme Court ruled Friday that police must obtain a search warrant in order to get access to cellphone location information.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Chief Justice John Roberts wrote the 5-to-4 decision, joining the court's four liberals. The majority declared that the Fourth Amendment guarantees an expectation of privacy and that allowing police to obtain moment-by-moment tracking of an individual's cellphone location is a kind of surveillance that the framers of the Constitution did not want to occur without a search warrant.\u003c/p>\n\u003cp>The chief justice said that this sort of tracking information is akin to wearing an electronic ankle-bracelet monitoring device and that the citizens of the country are protected from that kind of monitoring unless police can show a judge that there is probable cause of a crime that justifies it.\u003c/p>\n\u003cp>He stressed, however, that this is a narrowly focused opinion that leaves intact other precedents when it comes to dealing with financial information, banking and office records.\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>Roberts noted that the decision also allows for warrantless cell-tower location information searches in emergencies and for national-security purposes.\u003c/p>\n\u003cp>The four dissenters were led by Justice Anthony Kennedy, who was joined by the court's three most conservative members, justices Clarence Thomas, Samuel Alito and Neil Gorsuch. In a rare move, they each filed separate dissents.\u003c/p>\n\u003cp>\u003cstrong>The Background\u003c/strong>\u003c/p>\n\u003cp>The case arose out of a series of armed robberies in 2010 and 2011 — robberies, ironically, aimed at stealing hundreds of new cellphones and selling them for tens of thousands of dollars.\u003c/p>\n\u003cp>When police apprehended some members of the ring, the smaller fish implicated the leader of the ring, Timothy Carpenter. Police got a court order to get access to 127 days of cellphone tracking records for Carpenter and other members of the gang.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Lo and behold, Carpenter's general location information matched the robbery locations, and that information was used to help convict him. Carpenter appealed his conviction to the Supreme Court, contending that the Constitution required that police first obtain a warrant before getting this location information from a service provider.\u003c/p>\n\u003cp>Obtaining a warrant would have required the police to show a judge that they had probable cause to believe the phone records contained evidence of a crime. What the police did instead was obtain a court order under the federal Stored Communications Act, which is easier.\u003c/p>\n\u003cp>\u003cstrong>New Technology Clashes With Old Doctrine\u003c/strong>\u003c/p>\n\u003cp>This was seven years ago, and several smartphone generations ago, too.\u003c/p>\n\u003cp>The information used at Carpenter's trial was not exactly precise. It did not record where he was when he texted or where he was when his phone was not in use.\u003c/p>\n\u003cp>But when he made or received calls, the cellphone towers nearby recorded his general location with an accuracy range of about a half mile to 2 miles. And those calls matched up rather nicely with the vicinity of the robberies.\u003c/p>\n\u003cp>At \u003ca href=\"https://www.npr.org/2017/11/29/567348000/justices-may-impose-new-limits-on-government-access-to-cellphone-data\" target=\"_blank\" rel=\"noopener\">oral arguments in Novembe\u003c/a>r, the justices seemed torn about whether to break with the so-called third party doctrine. Adopted decades ago, that doctrine says that there is no reasonable expectation of privacy when an individual shares information with a third party — for example, the phone company, which knows what telephone numbers the individual calls and receives. Therefore, police do not have to get a search warrant to gain access to those numbers.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>But in recent years, the justices have expressed discomfort with that rule of law as applied to the modern digital age, when cellphones carried in a person's pocket can track locations day and night, and when email and text addresses tell a huge amount about an individual's contacts and lifestyle.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=In+Major+Privacy+Win%2C+Supreme+Court+Rules+Police+Need+Warrant+To+Track+Your+Cellphone&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/442997/in-major-privacy-win-supreme-court-says-police-need-warrant-to-track-your-cellphone","authors":["byline_futureofyou_442997"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_1559","futureofyou_301","futureofyou_1558","futureofyou_424","futureofyou_35"],"featImg":"futureofyou_442998","label":"source_futureofyou_442997"},"futureofyou_442214":{"type":"posts","id":"futureofyou_442214","meta":{"index":"posts_1591205157","site":"futureofyou","id":"442214","score":null,"sort":[1527867438000]},"guestAuthors":[],"slug":"when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit","title":"When Scientists Develop Products From Personal Medical Data, Who Should Profit?","publishDate":1527867438,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{},"content":"\u003cp>If you go to the hospital for medical treatment and scientists there decide to use your medical information to create a commercial product, are you owed anything as part of the bargain?[contextly_sidebar id=\"xg39QV5nwjkzRaw7H5UkEXIAZgbQaNjg\"]\u003c/p>\n\u003cp>That's one of the questions that is emerging as researchers and product developers eagerly delve into digital data such as CT scans and electronic medical records, making artificial-intelligence products that are helping doctors to manage information and even to help them diagnose disease.\u003c/p>\n\u003cp>This issue cropped up in 2016, when Google DeepMind decided to test an app that measures kidney health by gathering 1.6 million records from patients at the Royal Free Hospital in London. The British authorities found \u003ca href=\"http://www.bbc.com/news/technology-40483202\" target=\"_blank\" rel=\"noopener\">this broke patient privacy laws\u003c/a> in the United Kingdom. (\u003cem>Update on June 1 at 9:30 a.m. ET:\u003c/em> DeepMind \u003ca href=\"https://deepmind.com/blog/ico-royal-free/\" target=\"_blank\" rel=\"noopener\">says\u003c/a> it was able to deploy its app despite the violation.)\u003c/p>\n\u003cp>But the rules are different in the United States. The most notable cases have involved living tissue, but the legal arguments apply to medical data as well. One of the best examples dates back to 1976, when John Moore went to UCLA to be treated for hairy cell leukemia.\u003c/p>\n\u003cp>\u003ca href=\"http://law.gsu.edu/profile/leslie-e-wolf/\" target=\"_blank\" rel=\"noopener\">Prof. Leslie Wolf\u003c/a>, director of the Center for Health, Law and Society at the Georgia State University College of Law, says Moore's doctors gave him good medical care, \"but they also discovered there was something interesting about his cells and created a cell line from his cells without his knowledge,\" she says.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>\"And what complicated things even more is they asked Mr. Moore to travel down from his home in Seattle to L.A. multiple times, for seven years, to get additional cells without telling him they had this commercial interest in his cells.\"[contextly_sidebar id=\"DoYi5dXWSx7RCJVBTZf1P61atenUYp3T\"]\u003c/p>\n\u003cp>Moore sued. In 1990, The California Supreme Court \u003ca href=\"http://online.ceb.com/CalCases/C3/51C3d120.htm\" target=\"_blank\" rel=\"noopener\">decided that he did not own his cells\u003c/a>, but found his doctors had an obligation to inform him that his tissue was being used for commercial purposes and to give him a chance to object. Moore reached a settlement following his court battle, \"but Mr. Moore certainly felt betrayed through the process,\" Wolf says.\u003c/p>\n\u003cp>The most famous case of this nature involves a Maryland woman, Henrietta Lacks. Back in 1951, doctors at the Johns Hopkins hospital in Baltimore collected cells from her cervical cancer and turned them into the world's first immortal cell line, which grows perpetually in the lab and is used widely in research. As documented in Rebecca Skloot's \u003ca href=\"https://en.wikipedia.org/wiki/The_Immortal_Life_of_Henrietta_Lacks\">book\u003c/a> and an HBO biopic starring Oprah Winfrey, the family learned only much later what had transpired and received no compensation. In 2013, the National Institutes of Health \u003ca href=\"https://www.npr.org/sections/health-shots/2013/08/07/209807857/decades-after-lacks-death-family-gets-a-say-on-her-cells\" target=\"_blank\" rel=\"noopener\">came to an agreement with her family\u003c/a> guiding the use of her genetic information, but the family \u003ca href=\"https://www.washingtonpost.com/local/henrietta-lackss-family-wants-compensation-for-her-cells/2017/02/14/816481ba-f302-11e6-b9c9-e83fce42fb61_story.html?utm_term=.448bab1431d9\" target=\"_blank\" rel=\"noopener\">has continued to raise the issue\u003c/a>.\u003c/p>\n\u003cp>While those fights were about living tissue, \"in a certain sense whether it's cells or [digital] bits and bytes, it's all information about an individual, at some level,\" says \u003ca href=\"http://www.radiology.emory.edu/faculty/safdar-nabile.html\">Dr. Nabile Safdar,\u003c/a> a radiologist at Emory University and author \u003ca href=\"https://www.jacr.org/article/S1546-1440(17)31599-5/fulltext\">of a recent paper discussing the issue\u003c/a> of patients' rights as it pertains to their medical scans.\u003c/p>\n\u003cp>This information is increasingly being used in research, and that in turn can easily end up being used to develop a commercial product that's worth millions. Are the patients entitled to a cut?\u003c/p>\n\u003cp>\"That's a question that I think we need to figure out,\" Safdar says. \"And if were a patient and my data were used to develop something that was being shared outside as a product, I'd want to know.\"\u003c/p>\n\u003cp>That's not how it's usually done. At many research hospitals, patients routinely sign a paper, in that huge stack of admission paperwork, giving permission for the institution to use their personal data for research.\u003c/p>\n\u003cp>\"For someone to sign away the rights in perpetuity for their data to be used for all possible research applications in the future, that's something I think would deserve a lot of scrutiny, and that's not something I would agree with,\" Safdar says.\u003c/p>\n\u003cp>Here's a current example. Researchers at Johns Hopkins Medicine \u003ca href=\"https://www.npr.org/sections/health-shots/2018/05/30/615466696/for-some-hard-to-find-tumors-doctors-see-promise-in-artificial-intelligence\">are mining years of CT scans\u003c/a> that were performed initially to care for patients. Those patients signed a form saying it was okay to use that data for research. And the research has been approved by the university's institutional review board, which is charged with weighing the ethics of research projects, says \u003ca href=\"https://www.hopkinsmedicine.org/news/media/releases/karen_horton_named_director_of_department_of_radiology_and_radiological_science\">Dr. Karen Horton\u003c/a>, director of radiology.[contextly_sidebar id=\"njADn3noIN9V0ZYkwAdgQ0CYTEXexAJi\"]\u003c/p>\n\u003cp>Horton is now using some of this data to teach computers how to recognize pancreatic cancer. She says part of their agreement is that the data are stripped of all information that could identify an individual patient, \"so there's no [privacy] risk to a patient to have their images used to train the computer.\"\u003c/p>\n\u003cp>And Horton says technically, the data don't belong to the patients. \"Right now as the law defines it, your medical images are property of the health system,\" she says. \"You don't own the image.\"\u003c/p>\n\u003cp>But Wolf, the law professor and ethicist at Georgia State, says she's not sure that's a strong argument. \"Yes, they [the doctors] created the scans,\" she says, \"but certainly the patient has rights related to the scans,\" such as the right to view them and of course to decide at the outset whether they can be used in research.\u003c/p>\n\u003cp>It generally takes thousands of scans from many individuals to develop a commercial product, so no single person's data is especially valuable on its own. Overall, Wolf says, patients don't have much of a legal argument here, but there is an ethical issue.\u003c/p>\n\u003cp>\"My own concern is not that it is problematic \u003cem>per se\u003c/em>,\" she says. But, \"I don't think we've done a really good job of letting people know that this is in fact what we do with their data.\"\u003c/p>\n\u003cp>She \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4356669/\">cites lawsuits\u003c/a> where blood samples that had been taken at birth ended up being used for research.\u003c/p>\n\u003cp>\"One of the moms in the case said if 'I had been asked I think I would have said yes,' but it was the sense of not even being asked, and having the data used,\" Wolf says. \"People generally will agree, but they want to be asked, at least at some level.\"\u003c/p>\n\u003cp>And Safdar says there are times when people might, indeed, want to object to how their data are being used.\u003c/p>\n\u003cp>\"There's a wealth of information in a CT scan or an MRI,\" Safdar says. Looking at features such as liver fat, artery clogs and brain atrophy, researchers might calculate a probability for how long that person is likely to live.\u003c/p>\n\u003cp>These algorithms are generally called \"black boxes,\" because there's no way to know how they reach their conclusions. And if the computer algorithm \"spits out that you have two months to live, there are implications for employment, for insurability, for all kinds of things that impacts that person's daily life,\" Safdar says. \"That worries me a little bit, especially when it's not clear how that black box is making those decisions.\"\u003c/p>\n\u003cp>And what if the algorithm has actually baked in an unconscious prejudice of some sort, he asks, such as about race, age or sex?\u003c/p>\n\u003cp>\"When that same model, when trained [to work] on a specific group of people, is now applied to a totally different group of people, it could make totally erroneous decisions.\"\u003c/p>\n\u003cp>These issues are becoming more pressing as these AI-based products start coming to market.\u003c/p>\n\u003cp>\u003cem>You can contact Richard Harris at \u003c/em>\u003ca href=\"mailto:rharris@npr.org\">\u003cem>rharris@npr.org\u003c/em>\u003c/a>\u003cem>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=When+Scientists+Develop+Products+From+Personal+Medical+Data%2C+Who+Gets+To+Profit%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>SaveSaveSaveSaveSaveSave\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>SaveSave\u003c/p>\n\n","blocks":[],"excerpt":"Data from patient medical records are being used to develop commercial products. What rights do we have over the use of our personal health information?","status":"publish","parent":0,"modified":1527875474,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":32,"wordCount":1289},"headData":{"title":"When Scientists Develop Products From Personal Medical Data, Who Should Profit? | KQED","description":"Data from patient medical records are being used to develop commercial products. What rights do we have over the use of our personal health information?","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":""},"disqusIdentifier":"442214 https://ww2.kqed.org/futureofyou/?p=442214","disqusUrl":"https://ww2.kqed.org/futureofyou/2018/06/01/when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit/","disqusTitle":"When Scientists Develop Products From Personal Medical Data, Who Should Profit?","source":"Technology","nprByline":"Richard Harris, NPR","nprImageAgency":"Katherine Streeter for NPR","nprStoryId":"615501659","nprApiLink":"http://api.npr.org/query?id=615501659&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"https://www.npr.org/sections/health-shots/2018/05/31/615501659/when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit?ft=nprml&f=615501659","nprRetrievedStory":"1","nprPubDate":"Fri, 01 Jun 2018 10:52:00 -0400","nprStoryDate":"Thu, 31 May 2018 16:07:00 -0400","nprLastModifiedDate":"Fri, 01 Jun 2018 09:41:32 -0400","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2018/05/20180531_atc_when_scientists_develop_products_from_personal_medical_data_who_gets_to_profit.mp3?orgId=1&topicId=1128&d=246&p=2&story=615501659&ft=nprml&f=615501659","nprAudioM3u":"http://api.npr.org/m3u/1615911095-d0e10e.m3u?orgId=1&topicId=1128&d=246&p=2&story=615501659&ft=nprml&f=615501659","path":"/futureofyou/442214/when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2018/05/20180531_atc_when_scientists_develop_products_from_personal_medical_data_who_gets_to_profit.mp3?orgId=1&topicId=1128&d=246&p=2&story=615501659&ft=nprml&f=615501659","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>If you go to the hospital for medical treatment and scientists there decide to use your medical information to create a commercial product, are you owed anything as part of the bargain?\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>That's one of the questions that is emerging as researchers and product developers eagerly delve into digital data such as CT scans and electronic medical records, making artificial-intelligence products that are helping doctors to manage information and even to help them diagnose disease.\u003c/p>\n\u003cp>This issue cropped up in 2016, when Google DeepMind decided to test an app that measures kidney health by gathering 1.6 million records from patients at the Royal Free Hospital in London. The British authorities found \u003ca href=\"http://www.bbc.com/news/technology-40483202\" target=\"_blank\" rel=\"noopener\">this broke patient privacy laws\u003c/a> in the United Kingdom. (\u003cem>Update on June 1 at 9:30 a.m. ET:\u003c/em> DeepMind \u003ca href=\"https://deepmind.com/blog/ico-royal-free/\" target=\"_blank\" rel=\"noopener\">says\u003c/a> it was able to deploy its app despite the violation.)\u003c/p>\n\u003cp>But the rules are different in the United States. The most notable cases have involved living tissue, but the legal arguments apply to medical data as well. One of the best examples dates back to 1976, when John Moore went to UCLA to be treated for hairy cell leukemia.\u003c/p>\n\u003cp>\u003ca href=\"http://law.gsu.edu/profile/leslie-e-wolf/\" target=\"_blank\" rel=\"noopener\">Prof. Leslie Wolf\u003c/a>, director of the Center for Health, Law and Society at the Georgia State University College of Law, says Moore's doctors gave him good medical care, \"but they also discovered there was something interesting about his cells and created a cell line from his cells without his knowledge,\" she says.\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>\"And what complicated things even more is they asked Mr. Moore to travel down from his home in Seattle to L.A. multiple times, for seven years, to get additional cells without telling him they had this commercial interest in his cells.\"\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Moore sued. In 1990, The California Supreme Court \u003ca href=\"http://online.ceb.com/CalCases/C3/51C3d120.htm\" target=\"_blank\" rel=\"noopener\">decided that he did not own his cells\u003c/a>, but found his doctors had an obligation to inform him that his tissue was being used for commercial purposes and to give him a chance to object. Moore reached a settlement following his court battle, \"but Mr. Moore certainly felt betrayed through the process,\" Wolf says.\u003c/p>\n\u003cp>The most famous case of this nature involves a Maryland woman, Henrietta Lacks. Back in 1951, doctors at the Johns Hopkins hospital in Baltimore collected cells from her cervical cancer and turned them into the world's first immortal cell line, which grows perpetually in the lab and is used widely in research. As documented in Rebecca Skloot's \u003ca href=\"https://en.wikipedia.org/wiki/The_Immortal_Life_of_Henrietta_Lacks\">book\u003c/a> and an HBO biopic starring Oprah Winfrey, the family learned only much later what had transpired and received no compensation. In 2013, the National Institutes of Health \u003ca href=\"https://www.npr.org/sections/health-shots/2013/08/07/209807857/decades-after-lacks-death-family-gets-a-say-on-her-cells\" target=\"_blank\" rel=\"noopener\">came to an agreement with her family\u003c/a> guiding the use of her genetic information, but the family \u003ca href=\"https://www.washingtonpost.com/local/henrietta-lackss-family-wants-compensation-for-her-cells/2017/02/14/816481ba-f302-11e6-b9c9-e83fce42fb61_story.html?utm_term=.448bab1431d9\" target=\"_blank\" rel=\"noopener\">has continued to raise the issue\u003c/a>.\u003c/p>\n\u003cp>While those fights were about living tissue, \"in a certain sense whether it's cells or [digital] bits and bytes, it's all information about an individual, at some level,\" says \u003ca href=\"http://www.radiology.emory.edu/faculty/safdar-nabile.html\">Dr. Nabile Safdar,\u003c/a> a radiologist at Emory University and author \u003ca href=\"https://www.jacr.org/article/S1546-1440(17)31599-5/fulltext\">of a recent paper discussing the issue\u003c/a> of patients' rights as it pertains to their medical scans.\u003c/p>\n\u003cp>This information is increasingly being used in research, and that in turn can easily end up being used to develop a commercial product that's worth millions. Are the patients entitled to a cut?\u003c/p>\n\u003cp>\"That's a question that I think we need to figure out,\" Safdar says. \"And if were a patient and my data were used to develop something that was being shared outside as a product, I'd want to know.\"\u003c/p>\n\u003cp>That's not how it's usually done. At many research hospitals, patients routinely sign a paper, in that huge stack of admission paperwork, giving permission for the institution to use their personal data for research.\u003c/p>\n\u003cp>\"For someone to sign away the rights in perpetuity for their data to be used for all possible research applications in the future, that's something I think would deserve a lot of scrutiny, and that's not something I would agree with,\" Safdar says.\u003c/p>\n\u003cp>Here's a current example. Researchers at Johns Hopkins Medicine \u003ca href=\"https://www.npr.org/sections/health-shots/2018/05/30/615466696/for-some-hard-to-find-tumors-doctors-see-promise-in-artificial-intelligence\">are mining years of CT scans\u003c/a> that were performed initially to care for patients. Those patients signed a form saying it was okay to use that data for research. And the research has been approved by the university's institutional review board, which is charged with weighing the ethics of research projects, says \u003ca href=\"https://www.hopkinsmedicine.org/news/media/releases/karen_horton_named_director_of_department_of_radiology_and_radiological_science\">Dr. Karen Horton\u003c/a>, director of radiology.\u003c/p>\u003cp>\u003c/p>\u003cp>\u003c/p>\n\u003cp>Horton is now using some of this data to teach computers how to recognize pancreatic cancer. She says part of their agreement is that the data are stripped of all information that could identify an individual patient, \"so there's no [privacy] risk to a patient to have their images used to train the computer.\"\u003c/p>\n\u003cp>And Horton says technically, the data don't belong to the patients. \"Right now as the law defines it, your medical images are property of the health system,\" she says. \"You don't own the image.\"\u003c/p>\n\u003cp>But Wolf, the law professor and ethicist at Georgia State, says she's not sure that's a strong argument. \"Yes, they [the doctors] created the scans,\" she says, \"but certainly the patient has rights related to the scans,\" such as the right to view them and of course to decide at the outset whether they can be used in research.\u003c/p>\n\u003cp>It generally takes thousands of scans from many individuals to develop a commercial product, so no single person's data is especially valuable on its own. Overall, Wolf says, patients don't have much of a legal argument here, but there is an ethical issue.\u003c/p>\n\u003cp>\"My own concern is not that it is problematic \u003cem>per se\u003c/em>,\" she says. But, \"I don't think we've done a really good job of letting people know that this is in fact what we do with their data.\"\u003c/p>\n\u003cp>She \u003ca href=\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4356669/\">cites lawsuits\u003c/a> where blood samples that had been taken at birth ended up being used for research.\u003c/p>\n\u003cp>\"One of the moms in the case said if 'I had been asked I think I would have said yes,' but it was the sense of not even being asked, and having the data used,\" Wolf says. \"People generally will agree, but they want to be asked, at least at some level.\"\u003c/p>\n\u003cp>And Safdar says there are times when people might, indeed, want to object to how their data are being used.\u003c/p>\n\u003cp>\"There's a wealth of information in a CT scan or an MRI,\" Safdar says. Looking at features such as liver fat, artery clogs and brain atrophy, researchers might calculate a probability for how long that person is likely to live.\u003c/p>\n\u003cp>These algorithms are generally called \"black boxes,\" because there's no way to know how they reach their conclusions. And if the computer algorithm \"spits out that you have two months to live, there are implications for employment, for insurability, for all kinds of things that impacts that person's daily life,\" Safdar says. \"That worries me a little bit, especially when it's not clear how that black box is making those decisions.\"\u003c/p>\n\u003cp>And what if the algorithm has actually baked in an unconscious prejudice of some sort, he asks, such as about race, age or sex?\u003c/p>\n\u003cp>\"When that same model, when trained [to work] on a specific group of people, is now applied to a totally different group of people, it could make totally erroneous decisions.\"\u003c/p>\n\u003cp>These issues are becoming more pressing as these AI-based products start coming to market.\u003c/p>\n\u003cp>\u003cem>You can contact Richard Harris at \u003c/em>\u003ca href=\"mailto:rharris@npr.org\">\u003cem>rharris@npr.org\u003c/em>\u003c/a>\u003cem>.\u003c/em>\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2018 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"https://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=When+Scientists+Develop+Products+From+Personal+Medical+Data%2C+Who+Gets+To+Profit%3F&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\u003cp>SaveSaveSaveSaveSaveSave\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>SaveSave\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/442214/when-scientists-develop-products-from-personal-medical-data-who-gets-to-profit","authors":["byline_futureofyou_442214"],"categories":["futureofyou_1","futureofyou_73"],"tags":["futureofyou_301","futureofyou_190","futureofyou_61","futureofyou_424"],"featImg":"futureofyou_442216","label":"source_futureofyou_442214"},"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":""},"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. It is produced in partnership with WNYC.","imageSrc":"https://ww2.kqed.org/news/wp-content/uploads/sites/10/2018/05/freakonomicsRadio.png","officialWebsiteLink":"http://freakonomics.com/","airtime":"SUN 1am-2am, SAT 3pm-4pm","meta":{"site":"radio","source":"WNYC"},"link":"/radio/program/freakonomics-radio","subscribe":{"npr":"https://rpb3r.app.goo.gl/4s8b","apple":"https://itunes.apple.com/us/podcast/freakonomics-radio/id354668519","tuneIn":"https://tunein.com/podcasts/WNYC-Podcasts/Freakonomics-Radio-p272293/","rss":"https://feeds.feedburner.com/freakonomicsradio"}},"fresh-air":{"id":"fresh-air","title":"Fresh Air","info":"Hosted by Terry Gross, \u003cem>Fresh Air from WHYY\u003c/em> is the Peabody Award-winning weekday magazine of contemporary arts and issues. 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