Most Americans Want Drug Prices Controlled. Why Won't Congress Act?
Is Lung Cancer Screening Worth the Expense and Anxiety?
Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'
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Why Won't Congress Act?","publishDate":1507051849,"format":"standard","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>Of all the promises President Donald Trump made for the early part of his term, controlling stinging drug prices might have seemed the easiest to achieve.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There is a very aggressive lobby that is finding any and all means to thwart any reform to a system that has produced very lucrative profits.'\u003ccite>Ameet Sarpatwari, Harvard Medical School\u003c/cite>\u003c/aside>\n\u003cp>An angry public overwhelmingly wants change in an easily vilified industry. Big pharma’s recent publicity nightmare included thousand-percent price increases and a \u003ca href=\"https://www.vanityfair.com/news/2017/08/martin-shkreli-verdict\" target=\"_blank\" rel=\"noopener\">smirking CEO who said\u003c/a>, “I liken myself to the robber barons.” Even powerful members of Congress from both parties have said that drug prices are too high.\u003c/p>\n\u003cp>But any momentum to address prescription drug costs — a problem that \u003ca href=\"http://www.kff.org/slideshow/public-opinion-on-prescription-drugs-and-their-prices/\" target=\"_blank\" rel=\"noopener\">a large number of Americans\u003c/a> now believe government should solve — has been lost amid rancorous debates over replacing Obamacare and stalled by roadblocks erected via lobbying and industry cash.\u003c/p>\n\u003cp>“There is a very aggressive lobby that is finding any and all means to thwart any reform to a system that has produced very lucrative profits,” said Ameet Sarpatwari, an epidemiologist and lawyer at Harvard Medical School who follows drug legislation. “Everything that’s coming out is being hit and hit hard — even stuff that’s commonsensical.”\u003c/p>\n\u003cp>[contextly_sidebar id=\"RiRCaAhGLSSzIv8VTS6OBlnq3jBDwE0j\"]Those in Congress concerned with health policy have spent much of the year advancing proposals to overhaul the Affordable Care Act, none of which would affect pharmaceutical pricing. The latest Republican proposal, by Senators Lindsey Graham of South Carolina and Bill Cassidy of Louisiana, is no different.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Meanwhile, more than two dozen bills aimed at curbing drug costs have been introduced in this or the previous Congress, according to the Drug Pricing Lab, a Memorial Sloan Kettering Cancer Center program \u003ca href=\"https://drugpricinglab.org/tools/dpl-policy-tracker/\" target=\"_blank\" rel=\"noopener\">that has catalogued ideas for reducing prices.\u003c/a> Many have bipartisan support.\u003c/p>\n\u003cp>Proposals include importation from other developed countries, where regulations keep prices down; allowing government to negotiate the price of Medicare-covered drugs; speeding approval of cheaper generics; requiring notification before raising drug prices; and restricting consumer drug ads.\u003c/p>\n\u003cp>Other ideas that haven’t made it to legislation include banning patents for pills that simply copy or repackage existing medicines; and adjusting prices according to a drug’s effectiveness.\u003c/p>\n\u003cp>“There’s clearly no single solution out there that will solve this rapidly rising spending,” said Dr. Peter Bach, who leads the lab. But, he added, “there’s not a lot of fundamental disagreement about the direction this needs to move.”\u003c/p>\n\u003cp>Trump drew new attention to the issue last month by tweeting that Merck’s chief executive, Kenneth Frazier, “will have more time to LOWER RIPOFF DRUG PRICES!” after Frazier quit the president’s manufacturing council to protest his remarks about white supremacists in Charlottesville, Va.\u003c/p>\n\u003cp>Those comments matched Trump’s \u003ca href=\"http://www.politico.com/story/2017/01/trump-press-conference-drug-industry-233475\" target=\"_blank\" rel=\"noopener\">characterization earlier this year of drug companies\u003c/a>as “getting away with murder.” That same January day, a dozen Republican senators, including Ted Cruz of Texas, John McCain of Arizona and Mike Lee of Utah, voted for the old liberal idea of letting Americans buy less-expensive drugs from Canada.\u003c/p>\n\u003cp>[contextly_sidebar id=\"urt72cNaNX4YKl7iNuU8fZ3qlRARZvTT\"]The measure was attached to a budget resolution and \u003ca href=\"http://www.politifact.com/truth-o-meter/statements/2017/jan/18/other-98/viral-image-about-democratic-senators-and-big-phar/\" target=\"_blank\" rel=\"noopener\">wouldn’t, by itself,\u003c/a> have allowed importation. It failed 52 to 46 after 13 Democrats voted against it, with some citing safety concerns about foreign-sourced medicine — an idea promoted by American drugmakers.\u003c/p>\n\u003cp>Even so, the vote prompted speculation that a pharma price deal might be within reach.\u003c/p>\n\u003cp>Sen. Lee is one of the Republicans who favor importation as a way to increase competition. “When we’re talking about garden-variety, generic drugs that can be easily imported from another country that has regulatory procedures that make them safe?” he said in an interview. “I don’t see why not.”\u003c/p>\n\u003cp>In response to the new threats, the Pharmaceutical Research and Manufacturers of America, already one of Washington’s biggest-spending trade groups, \u003ca href=\"http://www.politico.com/story/2016/10/phrma-lobby-pricing-battle-230277\" target=\"_blank\" rel=\"noopener\">increased member dues by half\u003c/a> last year to prepare for battle.\u003c/p>\n\u003cp>The pharmaceutical and health products industries \u003ca href=\"https://www.opensecrets.org/lobby/indus.php?id=H&year=2017\" target=\"_blank\" rel=\"noopener\">spent $145 million\u003c/a> on lobbying for the first half of 2017, according to data from the Center for Responsive Politics.\u003c/p>\n\u003cp>Drug manufacturers gave $4.5 million to congressional campaigns in that period, including six-figure donations to House Speaker Paul Ryan; Rep. Greg Walden, head of the House Energy and Commerce Committee; and Sen. Orrin Hatch, head of the Senate Finance Committee, according to a Kaiser Health News analysis.\u003c/p>\n\u003cp>PhRMA’s “Go Boldly” campaign, showing heroic researchers seeking cures, has spent $28 million so far this year on six ads shown on about 4,600 national TV channels, according to iSpot.tv, an ad tracker.\u003c/p>\n\u003cp>The industry hired former FBI director Louis Freeh \u003ca href=\"https://storage.googleapis.com/m1738/20170605_Report%20on%20Counterfeit%20Drugs.pdf\" target=\"_blank\" rel=\"noopener\">to study\u003c/a> the impact of importation. He concluded that it would “leave the safety of the U.S. prescription drug supply vulnerable to criminals seeking to harm patients.” Import proponents argue the Food and Drug Administration could easily ensure safety by licensing and inspecting Canadian suppliers.\u003c/p>\n\u003cp>Drugmakers say that high prices reflect heavy investment in innovation and drug development. They reject the notion that the industry wields too much influence in Washington.\u003c/p>\n\u003cp>“These are important issues with significant ramifications,” Holly Campbell, a PhRMA spokeswoman, said. “So we will continue to be engaged with the administration to advance solutions that improve the marketplace and make it more responsive to the needs of patients.”\u003c/p>\n\u003cp>The top 10 publicly traded U.S. drug companies made $67.8 billion last year, after taxes, regulatory filings show.\u003c/p>\n\u003cp>Efforts to restrain prices have made little progress in the executive branch, either.\u003c/p>\n\u003cp>The White House has long been expected to issue an executive order on drug costs. But \u003ca href=\"https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html?_r=0\" target=\"_blank\" rel=\"noopener\">leaked documents\u003c/a> show that deliberations have focused on things the industry wants, such as \u003ca href=\"https://khn.org/news/exclusive-white-house-task-force-echoes-pharma-proposals/\" target=\"_blank\" rel=\"noopener\">extending overseas patents\u003c/a> and changing a drug-discount program for hospitals, and not so much on lowering prices.\u003c/p>\n\u003cp>Gerard Anderson, a health policy professor at Johns Hopkins University, said Trump’s draft order “did not talk at all about branded drugs or about specialty drugs,” including for rheumatoid arthritis and cancer, that have seen especially steep price increases. “If that represents the administration’s thinking, then my guess is there is not much effort.”\u003c/p>\n\u003cp>Trump’s ongoing feud with congressional Republicans, especially Senate Majority Leader Mitch McConnell, means “you’re not going to get any strong direction or leadership out of the White House” on drug prices, said Vishnu Lekraj, who follows pharma stocks for Morningstar, an investment research firm.\u003c/p>\n\u003cp>Trump isn’t the only one in his administration criticizing drug companies. Scott Gottlieb, the FDA commissioner, has accused the industry of \u003ca href=\"https://blogs.fda.gov/fdavoice/index.php/2017/06/fda-working-to-lift-barriers-to-generic-drug-competition/\" target=\"_blank\" rel=\"noopener\">“gaming” the system\u003c/a> to delay the appearance of cheap generics after patents expire. He has pledged to speed applications for generics when there is little competition as part of a \u003ca href=\"https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm564725.htm\" target=\"_blank\" rel=\"noopener\">“drug competition action plan”\u003c/a>while opposing stronger measures like allowing importation.\u003c/p>\n\u003cp>But promoting generics is “reasonably small potatoes” compared with the money that could be saved by putting direct pressure on brand-drug prices, Anderson said. Gottlieb has served on the boards of \u003ca href=\"https://www.opensecrets.org/news/2017/04/fda-nominee-gottlieb/\" target=\"_blank\" rel=\"noopener\">several pharmaceutical companies\u003c/a> and reaped large consulting and speaking fees from the industry.\u003c/p>\n\u003cp>Yet even small potatoes might be a long shot — despite widespread agreement that change is needed.\u003c/p>\n\u003cp>“It is sort of remarkable to see just how far the system can bend before meaningful reform is taken,” said Sarpatwari of Harvard. “If there ever was a time to strike while it’s hot, it’s now.”\u003c/p>\n\u003cp>\u003cem>Elizabeth Lucas and Sydney Lupkin contributed to this report.\u003c/em>\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\u003cem>KHN’s coverage of prescription drug development, costs and pricing is supported in part by the \u003ca href=\"http://www.arnoldfoundation.org/\" target=\"_blank\" rel=\"noopener\">Laura and John Arnold Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n","blocks":[],"excerpt":"Any momentum to address prescription drug costs has been lost amid rancorous debates over replacing Obamacare and stalled by roadblocks erected via lobbying and industry cash.","status":"publish","parent":0,"modified":1507051849,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":34,"wordCount":1355},"headData":{"title":"Most Americans Want Drug Prices Controlled. Why Won't Congress Act? | KQED","description":"Any momentum to address prescription drug costs has been lost amid rancorous debates over replacing Obamacare and stalled by roadblocks erected via lobbying and industry cash.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Most Americans Want Drug Prices Controlled. Why Won't Congress Act?","datePublished":"2017-10-03T17:30:49.000Z","dateModified":"2017-10-03T17:30:49.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"435763 https://ww2.kqed.org/futureofyou/?p=435763","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/10/03/most-americans-want-drug-prices-controlled-why-wont-congress-act/","disqusTitle":"Most Americans Want Drug Prices Controlled. Why Won't Congress Act?","nprByline":"Jay Hancock\u003c/br>Kaiser Health News","path":"/futureofyou/435763/most-americans-want-drug-prices-controlled-why-wont-congress-act","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Of all the promises President Donald Trump made for the early part of his term, controlling stinging drug prices might have seemed the easiest to achieve.\u003c/p>\n\u003caside class=\"pullquote alignright\">'There is a very aggressive lobby that is finding any and all means to thwart any reform to a system that has produced very lucrative profits.'\u003ccite>Ameet Sarpatwari, Harvard Medical School\u003c/cite>\u003c/aside>\n\u003cp>An angry public overwhelmingly wants change in an easily vilified industry. Big pharma’s recent publicity nightmare included thousand-percent price increases and a \u003ca href=\"https://www.vanityfair.com/news/2017/08/martin-shkreli-verdict\" target=\"_blank\" rel=\"noopener\">smirking CEO who said\u003c/a>, “I liken myself to the robber barons.” Even powerful members of Congress from both parties have said that drug prices are too high.\u003c/p>\n\u003cp>But any momentum to address prescription drug costs — a problem that \u003ca href=\"http://www.kff.org/slideshow/public-opinion-on-prescription-drugs-and-their-prices/\" target=\"_blank\" rel=\"noopener\">a large number of Americans\u003c/a> now believe government should solve — has been lost amid rancorous debates over replacing Obamacare and stalled by roadblocks erected via lobbying and industry cash.\u003c/p>\n\u003cp>“There is a very aggressive lobby that is finding any and all means to thwart any reform to a system that has produced very lucrative profits,” said Ameet Sarpatwari, an epidemiologist and lawyer at Harvard Medical School who follows drug legislation. “Everything that’s coming out is being hit and hit hard — even stuff that’s commonsensical.”\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>Those in Congress concerned with health policy have spent much of the year advancing proposals to overhaul the Affordable Care Act, none of which would affect pharmaceutical pricing. The latest Republican proposal, by Senators Lindsey Graham of South Carolina and Bill Cassidy of Louisiana, is no different.\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>Meanwhile, more than two dozen bills aimed at curbing drug costs have been introduced in this or the previous Congress, according to the Drug Pricing Lab, a Memorial Sloan Kettering Cancer Center program \u003ca href=\"https://drugpricinglab.org/tools/dpl-policy-tracker/\" target=\"_blank\" rel=\"noopener\">that has catalogued ideas for reducing prices.\u003c/a> Many have bipartisan support.\u003c/p>\n\u003cp>Proposals include importation from other developed countries, where regulations keep prices down; allowing government to negotiate the price of Medicare-covered drugs; speeding approval of cheaper generics; requiring notification before raising drug prices; and restricting consumer drug ads.\u003c/p>\n\u003cp>Other ideas that haven’t made it to legislation include banning patents for pills that simply copy or repackage existing medicines; and adjusting prices according to a drug’s effectiveness.\u003c/p>\n\u003cp>“There’s clearly no single solution out there that will solve this rapidly rising spending,” said Dr. Peter Bach, who leads the lab. But, he added, “there’s not a lot of fundamental disagreement about the direction this needs to move.”\u003c/p>\n\u003cp>Trump drew new attention to the issue last month by tweeting that Merck’s chief executive, Kenneth Frazier, “will have more time to LOWER RIPOFF DRUG PRICES!” after Frazier quit the president’s manufacturing council to protest his remarks about white supremacists in Charlottesville, Va.\u003c/p>\n\u003cp>Those comments matched Trump’s \u003ca href=\"http://www.politico.com/story/2017/01/trump-press-conference-drug-industry-233475\" target=\"_blank\" rel=\"noopener\">characterization earlier this year of drug companies\u003c/a>as “getting away with murder.” That same January day, a dozen Republican senators, including Ted Cruz of Texas, John McCain of Arizona and Mike Lee of Utah, voted for the old liberal idea of letting Americans buy less-expensive drugs from Canada.\u003c/p>\n\u003cp>\u003c/p>\u003cp>\u003c/p>\u003cp>The measure was attached to a budget resolution and \u003ca href=\"http://www.politifact.com/truth-o-meter/statements/2017/jan/18/other-98/viral-image-about-democratic-senators-and-big-phar/\" target=\"_blank\" rel=\"noopener\">wouldn’t, by itself,\u003c/a> have allowed importation. It failed 52 to 46 after 13 Democrats voted against it, with some citing safety concerns about foreign-sourced medicine — an idea promoted by American drugmakers.\u003c/p>\n\u003cp>Even so, the vote prompted speculation that a pharma price deal might be within reach.\u003c/p>\n\u003cp>Sen. Lee is one of the Republicans who favor importation as a way to increase competition. “When we’re talking about garden-variety, generic drugs that can be easily imported from another country that has regulatory procedures that make them safe?” he said in an interview. “I don’t see why not.”\u003c/p>\n\u003cp>In response to the new threats, the Pharmaceutical Research and Manufacturers of America, already one of Washington’s biggest-spending trade groups, \u003ca href=\"http://www.politico.com/story/2016/10/phrma-lobby-pricing-battle-230277\" target=\"_blank\" rel=\"noopener\">increased member dues by half\u003c/a> last year to prepare for battle.\u003c/p>\n\u003cp>The pharmaceutical and health products industries \u003ca href=\"https://www.opensecrets.org/lobby/indus.php?id=H&year=2017\" target=\"_blank\" rel=\"noopener\">spent $145 million\u003c/a> on lobbying for the first half of 2017, according to data from the Center for Responsive Politics.\u003c/p>\n\u003cp>Drug manufacturers gave $4.5 million to congressional campaigns in that period, including six-figure donations to House Speaker Paul Ryan; Rep. Greg Walden, head of the House Energy and Commerce Committee; and Sen. Orrin Hatch, head of the Senate Finance Committee, according to a Kaiser Health News analysis.\u003c/p>\n\u003cp>PhRMA’s “Go Boldly” campaign, showing heroic researchers seeking cures, has spent $28 million so far this year on six ads shown on about 4,600 national TV channels, according to iSpot.tv, an ad tracker.\u003c/p>\n\u003cp>The industry hired former FBI director Louis Freeh \u003ca href=\"https://storage.googleapis.com/m1738/20170605_Report%20on%20Counterfeit%20Drugs.pdf\" target=\"_blank\" rel=\"noopener\">to study\u003c/a> the impact of importation. He concluded that it would “leave the safety of the U.S. prescription drug supply vulnerable to criminals seeking to harm patients.” Import proponents argue the Food and Drug Administration could easily ensure safety by licensing and inspecting Canadian suppliers.\u003c/p>\n\u003cp>Drugmakers say that high prices reflect heavy investment in innovation and drug development. They reject the notion that the industry wields too much influence in Washington.\u003c/p>\n\u003cp>“These are important issues with significant ramifications,” Holly Campbell, a PhRMA spokeswoman, said. “So we will continue to be engaged with the administration to advance solutions that improve the marketplace and make it more responsive to the needs of patients.”\u003c/p>\n\u003cp>The top 10 publicly traded U.S. drug companies made $67.8 billion last year, after taxes, regulatory filings show.\u003c/p>\n\u003cp>Efforts to restrain prices have made little progress in the executive branch, either.\u003c/p>\n\u003cp>The White House has long been expected to issue an executive order on drug costs. But \u003ca href=\"https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html?_r=0\" target=\"_blank\" rel=\"noopener\">leaked documents\u003c/a> show that deliberations have focused on things the industry wants, such as \u003ca href=\"https://khn.org/news/exclusive-white-house-task-force-echoes-pharma-proposals/\" target=\"_blank\" rel=\"noopener\">extending overseas patents\u003c/a> and changing a drug-discount program for hospitals, and not so much on lowering prices.\u003c/p>\n\u003cp>Gerard Anderson, a health policy professor at Johns Hopkins University, said Trump’s draft order “did not talk at all about branded drugs or about specialty drugs,” including for rheumatoid arthritis and cancer, that have seen especially steep price increases. “If that represents the administration’s thinking, then my guess is there is not much effort.”\u003c/p>\n\u003cp>Trump’s ongoing feud with congressional Republicans, especially Senate Majority Leader Mitch McConnell, means “you’re not going to get any strong direction or leadership out of the White House” on drug prices, said Vishnu Lekraj, who follows pharma stocks for Morningstar, an investment research firm.\u003c/p>\n\u003cp>Trump isn’t the only one in his administration criticizing drug companies. Scott Gottlieb, the FDA commissioner, has accused the industry of \u003ca href=\"https://blogs.fda.gov/fdavoice/index.php/2017/06/fda-working-to-lift-barriers-to-generic-drug-competition/\" target=\"_blank\" rel=\"noopener\">“gaming” the system\u003c/a> to delay the appearance of cheap generics after patents expire. He has pledged to speed applications for generics when there is little competition as part of a \u003ca href=\"https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm564725.htm\" target=\"_blank\" rel=\"noopener\">“drug competition action plan”\u003c/a>while opposing stronger measures like allowing importation.\u003c/p>\n\u003cp>But promoting generics is “reasonably small potatoes” compared with the money that could be saved by putting direct pressure on brand-drug prices, Anderson said. Gottlieb has served on the boards of \u003ca href=\"https://www.opensecrets.org/news/2017/04/fda-nominee-gottlieb/\" target=\"_blank\" rel=\"noopener\">several pharmaceutical companies\u003c/a> and reaped large consulting and speaking fees from the industry.\u003c/p>\n\u003cp>Yet even small potatoes might be a long shot — despite widespread agreement that change is needed.\u003c/p>\n\u003cp>“It is sort of remarkable to see just how far the system can bend before meaningful reform is taken,” said Sarpatwari of Harvard. “If there ever was a time to strike while it’s hot, it’s now.”\u003c/p>\n\u003cp>\u003cem>Elizabeth Lucas and Sydney Lupkin contributed to this report.\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>KHN’s coverage of prescription drug development, costs and pricing is supported in part by the \u003ca href=\"http://www.arnoldfoundation.org/\" target=\"_blank\" rel=\"noopener\">Laura and John Arnold Foundation\u003c/a>.\u003c/em>\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/435763/most-americans-want-drug-prices-controlled-why-wont-congress-act","authors":["byline_futureofyou_435763"],"categories":["futureofyou_1"],"tags":["futureofyou_302","futureofyou_948","futureofyou_137","futureofyou_442"],"featImg":"futureofyou_435772","label":"futureofyou"},"futureofyou_328791":{"type":"posts","id":"futureofyou_328791","meta":{"index":"posts_1591205157","site":"futureofyou","id":"328791","score":null,"sort":[1485817378000]},"guestAuthors":[],"slug":"is-lung-cancer-screening-worth-the-expense-and-anxiety","title":"Is Lung Cancer Screening Worth the Expense and Anxiety?","publishDate":1485817378,"format":"standard","headTitle":"Future of You | KQED Future of You | KQED Science","labelTerm":{"term":54,"site":"futureofyou"},"content":"\u003cp>Screening for lung cancer using low-dose CT scans can save lives, but at a cost: Tests frequently produce anxiety-producing false alarms and prompt unnecessary procedures.\u003c/p>\n\u003cp>A study from the Veterans Health Administration lays out the considerable effort required by both patients and doctors to undertake screening.\u003c/p>\n\u003cp>\"I have heard people say 'what's the big deal, it's just a CT,' \" says Dr. Linda Kinsinger, who ran the study at the VA. \"But I think what we tried to show is it's a lot more than just a CT.\"\u003c/p>\n\u003cp>Federal officials and other medical groups \u003ca href=\"https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/lung-cancer-screening\">recommend\u003c/a> low-dose CT scans to look for lung cancer among people at risk, generally those over the age of 55 who have smoked at least the equivalent of two packs a day for 15 years. The tests typically cost $300, and they aren't always covered by insurance.\u003c/p>\n\u003cp>Screening does identify cancers, but in the vast majority of cases the test produces false alarms.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>In the VA \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2599437\">study\u003c/a>, which was published Monday in \u003cem>JAMA Internal Medicine\u003c/em>, 4,246 patients were eligible for screening. About half of them declined to take the test, even though it was offered at no cost.\u003c/p>\n\u003cp>Of those who took the test, about 55 percent of them were told that they had lung nodules, which often involved follow-up appointments and further scans. But very few of those nodules were actually real problems. In the end, the screeners identified 31 cases of lung cancer, about 20 of which were in the early, most treatable stage.\u003c/p>\n\u003cp>The study involved eight of the 150 or so VA hospitals, and was designed to assess the overall benefits and potential harms of setting up a screening program in a large medical institution.\u003c/p>\n\u003cp>So is it a good idea? \"I think it's a close call,\" Kinsinger says.\u003c/p>\n\u003cp>There was a benefit to the 20 or so patients out of this large initial population who had their cancer detected while it was likely to be treatable. \"But that has to be weighed against the amount of effort on the part of both patients and staff, and the anxiety, the worry, that a false alarm will cause among patients,\" she says.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Very few people are actually helped by screening, and a lot of time there are a number of harms.'\u003ccite>Dr. Rita Redberg, editor of \u003cem>JAMA Internal Medicine\u003c/em>\u003c/cite>\u003c/aside>\n\u003cp>\"I think a lot of people have a much rosier view of screening in general than the facts bear out,\" says Dr. Rita Redberg, editor of \u003cem>JAMA Internal Medicine\u003c/em> and a cardiologist at the University of California, San Francisco who wrote an \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2599435\">editorial\u003c/a> accompanying the study. \"Very few people are actually helped by screening, and a lot of time there are a number of harms.\"\u003c/p>\n\u003cp>Another \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2599436\">study\u003c/a> published in the same issue found that many people getting CT screens are actually at low risk for lung cancer. Dr. Jinhai Huo and colleagues at the MD Anderson Cancer Center compared screening rates before and after 2011, the year of a key study that supported the idea of low-dose CT screening for lung cancer.\u003c/p>\n\u003cp>\"Once a [radiology] center has the ability to do this screening, they like to use their technology to do as many people as possible,\" Redberg says, \"and it seems that low-risk people who are really unlikely to get any benefit and are much more likely to get harmed are getting screened in higher numbers than in the high-risk people who are supposed to be screened.\"\u003c/p>\n\u003cp>Dr. Jorge Gomez, a spokesman for the American Lung Association and an oncologist at Mt. Sinai Hospital in New York, says that while screening low-risk people doesn't make sense on a population basis, it sometimes makes sense for individual patients.\u003c/p>\n\u003cp>And as for the experience at the VA, Gomez says medical teams that have learned to interpret the results of scans can generally weed out false-positive results without resorting to biopsies or other invasive follow-up tests.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"There is a concern for unnecessary procedures at institutions where they don't have the expertise in reading these scans,\" he says. And he acknowledges not everybody has the luxury of going to the top-of-the-line institutions that do this best.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Lung+Cancer+Screening+Program+Finds+A+Lot+That%27s+Not+Cancer&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n","blocks":[],"excerpt":"Scanning people at risk for lung cancer finds many nodules that aren't cancerous but prompt more procedures, a study at the VA finds.","status":"publish","parent":0,"modified":1485817378,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":18,"wordCount":721},"headData":{"title":"Is Lung Cancer Screening Worth the Expense and Anxiety? | KQED","description":"Scanning people at risk for lung cancer finds many nodules that aren't cancerous but prompt more procedures, a study at the VA finds.","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Is Lung Cancer Screening Worth the Expense and Anxiety?","datePublished":"2017-01-30T23:02:58.000Z","dateModified":"2017-01-30T23:02:58.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"328791 https://ww2.kqed.org/futureofyou/?p=328791","disqusUrl":"https://ww2.kqed.org/futureofyou/2017/01/30/is-lung-cancer-screening-worth-the-expense-and-anxiety/","disqusTitle":"Is Lung Cancer Screening Worth the Expense and Anxiety?","nprImageCredit":"Medical Body Scans","nprByline":"Richard Harris\u003c/br>NPR","nprImageAgency":"Science Source","nprStoryId":"512468452","nprApiLink":"http://api.npr.org/query?id=512468452&apiKey=MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004","nprHtmlLink":"http://www.npr.org/sections/health-shots/2017/01/30/512468452/lung-cancer-screening-program-finds-a-lot-thats-not-cancer?ft=nprml&f=512468452","nprRetrievedStory":"1","nprPubDate":"Mon, 30 Jan 2017 16:57:00 -0500","nprStoryDate":"Mon, 30 Jan 2017 13:06:00 -0500","nprLastModifiedDate":"Mon, 30 Jan 2017 17:33:19 -0500","nprAudio":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2017/01/20170130_atc_lung_cancer_screening_program_finds_a_lot_thats_not_cancer.mp3?orgId=1&topicId=1128&d=178&p=2&story=512468452&t=progseg&e=512421369&seg=8&ft=nprml&f=512468452","nprAudioM3u":"http://api.npr.org/m3u/1512501579-7a50de.m3u?orgId=1&topicId=1128&d=178&p=2&story=512468452&t=progseg&e=512421369&seg=8&ft=nprml&f=512468452","path":"/futureofyou/328791/is-lung-cancer-screening-worth-the-expense-and-anxiety","audioUrl":"https://ondemand.npr.org/anon.npr-mp3/npr/atc/2017/01/20170130_atc_lung_cancer_screening_program_finds_a_lot_thats_not_cancer.mp3?orgId=1&topicId=1128&d=178&p=2&story=512468452&t=progseg&e=512421369&seg=8&ft=nprml&f=512468452","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>Screening for lung cancer using low-dose CT scans can save lives, but at a cost: Tests frequently produce anxiety-producing false alarms and prompt unnecessary procedures.\u003c/p>\n\u003cp>A study from the Veterans Health Administration lays out the considerable effort required by both patients and doctors to undertake screening.\u003c/p>\n\u003cp>\"I have heard people say 'what's the big deal, it's just a CT,' \" says Dr. Linda Kinsinger, who ran the study at the VA. \"But I think what we tried to show is it's a lot more than just a CT.\"\u003c/p>\n\u003cp>Federal officials and other medical groups \u003ca href=\"https://www.uspreventiveservicestaskforce.org/Page/Document/UpdateSummaryFinal/lung-cancer-screening\">recommend\u003c/a> low-dose CT scans to look for lung cancer among people at risk, generally those over the age of 55 who have smoked at least the equivalent of two packs a day for 15 years. The tests typically cost $300, and they aren't always covered by insurance.\u003c/p>\n\u003cp>Screening does identify cancers, but in the vast majority of cases the test produces false alarms.\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>In the VA \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2599437\">study\u003c/a>, which was published Monday in \u003cem>JAMA Internal Medicine\u003c/em>, 4,246 patients were eligible for screening. About half of them declined to take the test, even though it was offered at no cost.\u003c/p>\n\u003cp>Of those who took the test, about 55 percent of them were told that they had lung nodules, which often involved follow-up appointments and further scans. But very few of those nodules were actually real problems. In the end, the screeners identified 31 cases of lung cancer, about 20 of which were in the early, most treatable stage.\u003c/p>\n\u003cp>The study involved eight of the 150 or so VA hospitals, and was designed to assess the overall benefits and potential harms of setting up a screening program in a large medical institution.\u003c/p>\n\u003cp>So is it a good idea? \"I think it's a close call,\" Kinsinger says.\u003c/p>\n\u003cp>There was a benefit to the 20 or so patients out of this large initial population who had their cancer detected while it was likely to be treatable. \"But that has to be weighed against the amount of effort on the part of both patients and staff, and the anxiety, the worry, that a false alarm will cause among patients,\" she says.\u003c/p>\n\u003caside class=\"pullquote alignright\">'Very few people are actually helped by screening, and a lot of time there are a number of harms.'\u003ccite>Dr. Rita Redberg, editor of \u003cem>JAMA Internal Medicine\u003c/em>\u003c/cite>\u003c/aside>\n\u003cp>\"I think a lot of people have a much rosier view of screening in general than the facts bear out,\" says Dr. Rita Redberg, editor of \u003cem>JAMA Internal Medicine\u003c/em> and a cardiologist at the University of California, San Francisco who wrote an \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2599435\">editorial\u003c/a> accompanying the study. \"Very few people are actually helped by screening, and a lot of time there are a number of harms.\"\u003c/p>\n\u003cp>Another \u003ca href=\"http://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2599436\">study\u003c/a> published in the same issue found that many people getting CT screens are actually at low risk for lung cancer. Dr. Jinhai Huo and colleagues at the MD Anderson Cancer Center compared screening rates before and after 2011, the year of a key study that supported the idea of low-dose CT screening for lung cancer.\u003c/p>\n\u003cp>\"Once a [radiology] center has the ability to do this screening, they like to use their technology to do as many people as possible,\" Redberg says, \"and it seems that low-risk people who are really unlikely to get any benefit and are much more likely to get harmed are getting screened in higher numbers than in the high-risk people who are supposed to be screened.\"\u003c/p>\n\u003cp>Dr. Jorge Gomez, a spokesman for the American Lung Association and an oncologist at Mt. Sinai Hospital in New York, says that while screening low-risk people doesn't make sense on a population basis, it sometimes makes sense for individual patients.\u003c/p>\n\u003cp>And as for the experience at the VA, Gomez says medical teams that have learned to interpret the results of scans can generally weed out false-positive results without resorting to biopsies or other invasive follow-up tests.\u003c/p>\n\u003cp>\u003c/p>\n\u003cp>\"There is a concern for unnecessary procedures at institutions where they don't have the expertise in reading these scans,\" he says. And he acknowledges not everybody has the luxury of going to the top-of-the-line institutions that do this best.\u003c/p>\n\u003cdiv class=\"fullattribution\">Copyright 2017 NPR. To see more, visit http://www.npr.org/.\u003cimg src=\"http://www.google-analytics.com/__utm.gif?utmac=UA-5828686-4&utmdt=Lung+Cancer+Screening+Program+Finds+A+Lot+That%27s+Not+Cancer&utme=8(APIKey)9(MDAxOTAwOTE4MDEyMTkxMDAzNjczZDljZA004)\">\u003c/div>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/328791/is-lung-cancer-screening-worth-the-expense-and-anxiety","authors":["byline_futureofyou_328791"],"programs":["futureofyou_54"],"categories":["futureofyou_1"],"tags":["futureofyou_103","futureofyou_302","futureofyou_276","futureofyou_598"],"featImg":"futureofyou_328792","label":"futureofyou_54"},"futureofyou_2519":{"type":"posts","id":"futureofyou_2519","meta":{"index":"posts_1591205157","site":"futureofyou","id":"2519","score":null,"sort":[1431368072000]},"guestAuthors":[],"slug":"patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death","title":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'","publishDate":1431368072,"format":"image","headTitle":"KQED Future of You | KQED Science","labelTerm":{"site":"futureofyou"},"content":"\u003cp>For Julia Hallisy, putting medical information into the hands of patients isn't just a professional crusade; it's a personal one.\u003c/p>\n\u003cp>Hallisy learned the hard way that patients and their families, and not just doctors, can benefit from accessing personal medical documents, including scans, test results and written notes.\u003c/p>\n\u003cp>That's because her daughter Kate \u003ca href=\"http://empoweredpatientcoalition.org/julia-hallisy-inspirational-story-of-kate-hallisy-published-in-california-woman-magazine/\">fought cancer five times\u003c/a> by the time she was ten-years-old.\u003c/p>\n\u003cp>\"After requesting Kate’s records, I saw all sorts of things that concerned me, whether it was tired residents making mistakes, factual errors, or written notes that contradicted each other.\"\u003c/p>\n\u003cp>\"Most people don't ask for a copy of their medical record, which is a terrible mistake,\" she said.\u003c/p>\n\u003cp>[ad fullwidth]\u003c/p>\n\u003cp>Kate passed away in 2000, the same year that the government \u003ca href=\"http://www.hhs.gov/ocr/privacy/hipaa/administrative/privacyrule/prdecember2000all8parts.pdf\">passed a rule requiring\u003c/a> that health providers share a paper copy of the medical record at a \"reasonable cost\" to patients who request it (\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">view an estimate of state-by-state costs for 75-pages here\u003c/a>). In 2009, the Obama administration went one step further with a program\u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures-2/patient-ability-electronically-view-download-transmit-vdt-health-information\"> known as \"Meaningful Use,\" which would reward\u003c/a> physicians who provide a percentage of patients with timely, electronic access to their medical record -- and later penalized those who failed to do so.\u003c/p>\n\u003cp>But many patients are struggling to access their medical information, electronic or otherwise. According to a \u003ca href=\"http://www.pwc.com/us/en/health-industries/publications/putting-patients-into-meaningful-use.jhtml\">recent report \u003c/a> from PricewaterhouseCoopers, only 14 percent of patients get their medical records electronically from their physicians' offices. Thirty percent say they don't understand why they would need to do so.\u003c/p>\n\u003cp>Today, the debate is raging between doctors, patient groups and the government about how to mediate patients' access to their own health records.\u003c/p>\n\u003cfigure id=\"attachment_2574\" class=\"wp-caption alignright\" style=\"max-width: 385px\">\u003cimg class=\" wp-image-2574\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg\" alt=\"Julia Hallisy and her daughter Kate \" width=\"385\" height=\"327\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg 705w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-400x340.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate.jpg 940w\" sizes=\"(max-width: 385px) 100vw, 385px\">\u003cfigcaption class=\"wp-caption-text\">Julia Hallisy and her daughter Kate \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The approach set forth by the \u003ca href=\"http://www.cms.gov/\">Centers for Medicare and Medicaid Services\u003c/a> (CMS) puts the responsibility squarely on doctors for ensuring \u003cem>five percent\u003c/em> of their patients \"\u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">views, downloads, or transmits his or her health information to a third party.\u003c/a>\"\u003c/p>\n\u003cp>\"Physicians are being held accountable for patients' freedom of choice,\" said Dr. Steve J. Stack, president-elect of the American Medical Association (AMA).\u003c/p>\n\u003cp>Stack \u003ca href=\"http://www.ama-assn.org/ama/pub/news/news/2014/2014-12-17-cms-meaningful-use-penalties.page\">said 52 percent of physicians\u003c/a> who treat Medicare patients are currently being penalized for failing to meet the requirement. Those losses are \u003ca href=\"http://www.fierceemr.com/story/cms-estimates-eps-will-pay-200-million-meaningful-use-penalties/2015-02-12\">expected to equal some $200 million \u003c/a>this year alone.\u003c/p>\n\u003cp>Doctors are taking extreme measures to meet this rule, including sitting the patient down and requesting that they log-in to a \"patient portal\" to view their health information before they can go home, physician groups say.\u003c/p>\n\u003cp>In response to these concerns, CMS is now considering \u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/menu-measures/patient-electronic-access\">rolling-back the 5 percent requirement with a proposed rule change. \u003c/a>If it passes after a \u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">comment period ending on June 16\u003c/a> of this year, eligible medical professionals must only prove that \u003cem>one patient\u003c/em> views, downloads, or transmits his or her health information, rather than \u003cem>5 percent\u003c/em>.\u003c/p>\n\u003cp>Some groups like the AMA believe the proposed change is a positive step as it relieves some of the pressure of overburdened doctors.\u003c/p>\n\u003cp>As Stack points out, doctors will still need to provide 50 percent of their patients access to their medical information within 4 days (with an option to withhold sensitive materials.) But this differs from the so-called \"5 percent\" clause, as doctors aren't on the line if patients don't view their record -- or realize it exists.\u003c/p>\n\u003cp>But patient advocates are up in arms.\u003c/p>\n\u003cp>\"Are they [the Obama Administration] trying to push our buttons? This is a slap in the face to patient rights,\" said Regina Holliday, a patient activist from Grantsville, Maryland.\u003c/p>\n\u003cp>\u003cstrong>The \"Messy\" Access Problem\u003c/strong>\u003c/p>\n\u003cp>For decades, patients had little or no access to their medical information. This was considered the exclusive realm of physicians.\u003c/p>\n\u003cp>\u003ca href=\"http://hitconsultant.net/2014/03/10/improved-patient-engagement-for-better-outcomes/\">But recent research has shown \u003c/a>that when patients engage with their medical data, it leads to better outcomes. And cancer survivors like Dave deBronkart, who goes by his Internet moniker “\u003ca href=\"http://www.epatientdave.com/\">ePatient Dave\u003c/a>” say patient involvement can lead to fewer fatal mistakes.\u003c/p>\n\u003cp>Medical records contain errors about “two-thirds of the time,” he said. \"It's a matter of life and death.\" It's tricky to estimate exactly how many medical records contain mistakes. But in recent years, the issue has received national attention with patient safety groups\u003ca href=\"http://www.healthcareitnews.com/news/deaths-by-medical-mistakes-hit-records\"> making calls in the Senate\u003c/a> for electronic systems that minimize cognitive errors.\u003c/p>\n\u003cp>So why are health providers pushing back on legitimate patient requests?\u003c/p>\n\u003cp>They may harbor fears that opening up data would negatively affect their bottom-line. Economists\u003ca href=\"http://www.nber.org/papers/w20565\"> have found\u003c/a> that in states where it's easier and cheaper to access a medical record, patients are more likely to make a switch to a different physician or specialist.\u003c/p>\n\u003cp>As a result, many patients are told they \u003cem>can\u003c/em> access their medical record electronically, but it remains a logistical nightmare to do so.\u003c/p>\n\u003cp>High-profile technology investor Esther Dyson said she paid an intern to spend a summer filing requests for her medical information from different hospitals and clinics. After months of work, this intern was able to access no more than a few records -- the rest had been deleted or lost.\u003c/p>\n\u003cp>\"It was a very messy process,\" Dyson recalled.\u003c/p>\n\u003cp>Most people, particularly those who are suffering from serious illness, don't have the resources to hire an assistant or \u003ca href=\"https://picnichealth.com/\">pay a company\u003c/a> to pull together their medical information.\u003c/p>\n\u003cp>\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">In addition, reports have shown that some providers will charge fees\u003c/a> of over $1.50 per page of a medical record, which can result in a total bill of in excess of $1,000. Moreover, many people face long wait-times and reports are often filled with scrawled notes and medical jargon.\u003c/p>\n\u003cp>\u003cstrong>Can Technology Make a Difference?\u003c/strong>\u003c/p>\n\u003cp>But patient advocates like Hallisy are optimistic that patient data will flow more easily as health care shifts from paper-based to digital systems.\u003c/p>\n\u003cp>It costs far less for a hospital to reproduce an electronic copy of a document than to print it. And logically speaking, it should be far more efficient to perform a computer-based search than search through a stack of files.\u003c/p>\n\u003cfigure id=\"attachment_2561\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2561\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/medical-dat-800x598.jpg\" alt=\"Hallisy stacked her daughter's medical reports\" width=\"800\" height=\"598\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-800x598.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-1180x881.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-960x717.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Hallisy stacked her daughter's medical reports \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But this is easier said than done.\u003c/p>\n\u003cp>Many hospitals and clinics have been reluctant to invest in web tools that would make it more seamless for patients to access their medical information online. And electronic medical records cannot \u003ca href=\"http://ww2.kqed.org/futureofyou/broken-medical-records\">be efficiently or securely shared between doctors\u003c/a>, making it difficult to collect the records from various hospitals and clinics.\u003c/p>\n\u003cp>Instead, many patients today will be deferred to a web \"portal\" of sorts, \u003ca href=\"http://www.epicpc.com/patient-portal/\">like Epic's MyChart\u003c/a>, to view fragments of their medication information.\u003c/p>\n\u003cp>But many of these portals are outdated, said former Department of Health and Human Services technology chief Bryan Sivak.\u003c/p>\n\u003cp>\"Many offer little useful functionality and are difficult to use,\" said Sivak. \"Frankly, they could be designed much better.\"\u003c/p>\n\u003cp>Some hospitals have argued that patients aren't accessing these portals, so they must be indifferent. Why bother investing in more modern technology?\u003c/p>\n\u003cp>\"You often hear the argument that not every patient wants to spend the time,\" said Joseph Smith, a cardiologist and chief medical officer for \u003ca href=\"http://www.westhealth.org/institute\">West Health\u003c/a>, a nonprofit medical research organization.\u003c/p>\n\u003cp>\"And not every hospital has been able to make it through the technical requirements as we shift away from paper,\" he said. \"We are in an awkward time.\"\u003c/p>\n\u003cp>\u003cstrong>\"A Slap in the Face to Patient Rights\"\u003c/strong>\u003c/p>\n\u003cp>For Hallisy and other patient advocates, hospitals are showing signs of giving up on patients -- without investing in user-friendly tools and education programs.\u003c/p>\n\u003cp>And the proposed rule change is yet another example of the government and health sector folding its cards too soon, say advocates.\u003c/p>\n\u003cp>\"We needed to give providers a high enough threshold [5 percent], so they would do the work and incorporate patient facing tools into the practice,\" said Arien Malec, who worked as technology coordinator for the \u003ca href=\"http://www.hhs.gov/\">department of Health and Human Services. \u003c/a>\u003c/p>\n\u003cp>\"Now, they won't have to tell any patients. If they can’t find out how to access their medical record, the hospital doesn’t have to help them,\" he said.\u003c/p>\n\u003cp>Hallisy fears that hospitals may slash budgets for patient-facing tools to access medical data.\u003c/p>\n\u003cfigure id=\"attachment_2567\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2567\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/regina-holliday-800x600.jpg\" alt=\"Regina Holliday uses art to spread the word about patient rights \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-1180x883.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-960x719.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Regina Holliday uses art to spread the word about patient rights \u003ccite>(Regina Holliday)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Holliday agrees: \"There's a bad joke circulating that the one person could be a hospital staff-member, like a chief nursing officer.\"\u003c/p>\n\u003cp>Holliday's husband died of kidney cancer in 2009. During his hospitalization, she requested to see a copy of his medical records, but the hospital informed her that it would take 21 days. As Holliday frequently points out, three weeks is a long time to wait for patients in critical condition.\u003c/p>\n\u003cp>\u003cstrong>Ownership versus Access\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>Technically speaking, patients don't own their medical record. Their doctors do.\u003c/p>\n\u003cp>And that has led to much of the complications around patient data rights.\u003c/p>\n\u003cp>In the policy world, questions often arise like, who owns the medical record data if a patient has multiple doctors? And who has the right to delete it or bar electronic access? And as patients start generating medical information from the latest apps and devices, will they own that -- or would the developer?\u003c/p>\n\u003cp>Moreover, it still remains a contested issue about which parties or groups are responsible for educating patients about the value of access to their medical record. Some have pointed the finger at patient advocates; some say it's the responsibility of the physician or the federal government.\u003c/p>\n\u003cp>But setbacks aside, some industry insiders are hopeful that the health sector will find answers in the coming years, \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/13/startups-entrepreneurs-try-to-solve-medical-records-debacle/\">particularly given the recent outpouring of patient-focused tools\u003c/a> from Silicon Valley and other tech hubs.\u003c/p>\n\u003cp>\"It gets a little better every year. It's baby steps in health IT,\" said Dan Haley, a regulatory affairs expert at electronic health record company \u003ca href=\"http://athenahealth.com/\">AthenaHealth\u003c/a>.\u003c/p>\n\u003cp>But for her part, Hallisy has no intention of sitting back and waiting for change:\u003c/p>\n\u003cp>[ad floatright]\u003c/p>\n\u003cp>\"This means the kind of work I do is more important than ever,\" she said. \"Medicine is changing. It could be interactive and collaborative, but we need the public's help.\"\u003c/p>\n\n","blocks":[],"excerpt":"Most patients in the U.S. are still struggling to access a copy of their medical record, electronic or otherwise. Is there hope for the future? Patient advocates, physician groups and policymakers speak out. ","status":"publish","parent":0,"modified":1477282816,"stats":{"hasAudio":false,"hasVideo":false,"hasChartOrMap":false,"iframeSrcs":[],"hasGoogleForm":false,"hasGallery":false,"hasHearkenModule":false,"hasPolis":false,"paragraphCount":58,"wordCount":1729},"headData":{"title":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death' | KQED","description":"Most patients in the U.S. are still struggling to access a copy of their medical record, electronic or otherwise. Is there hope for the future? Patient advocates, physician groups and policymakers speak out. ","ogTitle":"","ogDescription":"","ogImgId":"","twTitle":"","twDescription":"","twImgId":"","schema":{"@context":"http://schema.org","@type":"Article","headline":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'","datePublished":"2015-05-11T18:14:32.000Z","dateModified":"2016-10-24T04:20:16.000Z","image":"https://cdn.kqed.org/wp-content/uploads/2020/02/KQED-OG-Image@1x.png"}},"disqusIdentifier":"2519 http://ww2.kqed.org/futureofyou/?p=2519","disqusUrl":"https://ww2.kqed.org/futureofyou/2015/05/11/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death/","disqusTitle":"Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'","path":"/futureofyou/2519/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death","audioTrackLength":null,"parsedContent":[{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003cp>For Julia Hallisy, putting medical information into the hands of patients isn't just a professional crusade; it's a personal one.\u003c/p>\n\u003cp>Hallisy learned the hard way that patients and their families, and not just doctors, can benefit from accessing personal medical documents, including scans, test results and written notes.\u003c/p>\n\u003cp>That's because her daughter Kate \u003ca href=\"http://empoweredpatientcoalition.org/julia-hallisy-inspirational-story-of-kate-hallisy-published-in-california-woman-magazine/\">fought cancer five times\u003c/a> by the time she was ten-years-old.\u003c/p>\n\u003cp>\"After requesting Kate’s records, I saw all sorts of things that concerned me, whether it was tired residents making mistakes, factual errors, or written notes that contradicted each other.\"\u003c/p>\n\u003cp>\"Most people don't ask for a copy of their medical record, which is a terrible mistake,\" she said.\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"fullwidth"},"numeric":["fullwidth"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>Kate passed away in 2000, the same year that the government \u003ca href=\"http://www.hhs.gov/ocr/privacy/hipaa/administrative/privacyrule/prdecember2000all8parts.pdf\">passed a rule requiring\u003c/a> that health providers share a paper copy of the medical record at a \"reasonable cost\" to patients who request it (\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">view an estimate of state-by-state costs for 75-pages here\u003c/a>). In 2009, the Obama administration went one step further with a program\u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/core-measures-2/patient-ability-electronically-view-download-transmit-vdt-health-information\"> known as \"Meaningful Use,\" which would reward\u003c/a> physicians who provide a percentage of patients with timely, electronic access to their medical record -- and later penalized those who failed to do so.\u003c/p>\n\u003cp>But many patients are struggling to access their medical information, electronic or otherwise. According to a \u003ca href=\"http://www.pwc.com/us/en/health-industries/publications/putting-patients-into-meaningful-use.jhtml\">recent report \u003c/a> from PricewaterhouseCoopers, only 14 percent of patients get their medical records electronically from their physicians' offices. Thirty percent say they don't understand why they would need to do so.\u003c/p>\n\u003cp>Today, the debate is raging between doctors, patient groups and the government about how to mediate patients' access to their own health records.\u003c/p>\n\u003cfigure id=\"attachment_2574\" class=\"wp-caption alignright\" style=\"max-width: 385px\">\u003cimg class=\" wp-image-2574\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg\" alt=\"Julia Hallisy and her daughter Kate \" width=\"385\" height=\"327\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-705x600.jpg 705w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate-400x340.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/julia-and-kate.jpg 940w\" sizes=\"(max-width: 385px) 100vw, 385px\">\u003cfigcaption class=\"wp-caption-text\">Julia Hallisy and her daughter Kate \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>The approach set forth by the \u003ca href=\"http://www.cms.gov/\">Centers for Medicare and Medicaid Services\u003c/a> (CMS) puts the responsibility squarely on doctors for ensuring \u003cem>five percent\u003c/em> of their patients \"\u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">views, downloads, or transmits his or her health information to a third party.\u003c/a>\"\u003c/p>\n\u003cp>\"Physicians are being held accountable for patients' freedom of choice,\" said Dr. Steve J. Stack, president-elect of the American Medical Association (AMA).\u003c/p>\n\u003cp>Stack \u003ca href=\"http://www.ama-assn.org/ama/pub/news/news/2014/2014-12-17-cms-meaningful-use-penalties.page\">said 52 percent of physicians\u003c/a> who treat Medicare patients are currently being penalized for failing to meet the requirement. Those losses are \u003ca href=\"http://www.fierceemr.com/story/cms-estimates-eps-will-pay-200-million-meaningful-use-penalties/2015-02-12\">expected to equal some $200 million \u003c/a>this year alone.\u003c/p>\n\u003cp>Doctors are taking extreme measures to meet this rule, including sitting the patient down and requesting that they log-in to a \"patient portal\" to view their health information before they can go home, physician groups say.\u003c/p>\n\u003cp>In response to these concerns, CMS is now considering \u003ca href=\"http://www.healthit.gov/providers-professionals/achieve-meaningful-use/menu-measures/patient-electronic-access\">rolling-back the 5 percent requirement with a proposed rule change. \u003c/a>If it passes after a \u003ca href=\"https://www.federalregister.gov/articles/2015/04/15/2015-08514/medicare-and-medicaid-programs-electronic-health-record-incentive-program-modifications-to\">comment period ending on June 16\u003c/a> of this year, eligible medical professionals must only prove that \u003cem>one patient\u003c/em> views, downloads, or transmits his or her health information, rather than \u003cem>5 percent\u003c/em>.\u003c/p>\n\u003cp>Some groups like the AMA believe the proposed change is a positive step as it relieves some of the pressure of overburdened doctors.\u003c/p>\n\u003cp>As Stack points out, doctors will still need to provide 50 percent of their patients access to their medical information within 4 days (with an option to withhold sensitive materials.) But this differs from the so-called \"5 percent\" clause, as doctors aren't on the line if patients don't view their record -- or realize it exists.\u003c/p>\n\u003cp>But patient advocates are up in arms.\u003c/p>\n\u003cp>\"Are they [the Obama Administration] trying to push our buttons? This is a slap in the face to patient rights,\" said Regina Holliday, a patient activist from Grantsville, Maryland.\u003c/p>\n\u003cp>\u003cstrong>The \"Messy\" Access Problem\u003c/strong>\u003c/p>\n\u003cp>For decades, patients had little or no access to their medical information. This was considered the exclusive realm of physicians.\u003c/p>\n\u003cp>\u003ca href=\"http://hitconsultant.net/2014/03/10/improved-patient-engagement-for-better-outcomes/\">But recent research has shown \u003c/a>that when patients engage with their medical data, it leads to better outcomes. And cancer survivors like Dave deBronkart, who goes by his Internet moniker “\u003ca href=\"http://www.epatientdave.com/\">ePatient Dave\u003c/a>” say patient involvement can lead to fewer fatal mistakes.\u003c/p>\n\u003cp>Medical records contain errors about “two-thirds of the time,” he said. \"It's a matter of life and death.\" It's tricky to estimate exactly how many medical records contain mistakes. But in recent years, the issue has received national attention with patient safety groups\u003ca href=\"http://www.healthcareitnews.com/news/deaths-by-medical-mistakes-hit-records\"> making calls in the Senate\u003c/a> for electronic systems that minimize cognitive errors.\u003c/p>\n\u003cp>So why are health providers pushing back on legitimate patient requests?\u003c/p>\n\u003cp>They may harbor fears that opening up data would negatively affect their bottom-line. Economists\u003ca href=\"http://www.nber.org/papers/w20565\"> have found\u003c/a> that in states where it's easier and cheaper to access a medical record, patients are more likely to make a switch to a different physician or specialist.\u003c/p>\n\u003cp>As a result, many patients are told they \u003cem>can\u003c/em> access their medical record electronically, but it remains a logistical nightmare to do so.\u003c/p>\n\u003cp>High-profile technology investor Esther Dyson said she paid an intern to spend a summer filing requests for her medical information from different hospitals and clinics. After months of work, this intern was able to access no more than a few records -- the rest had been deleted or lost.\u003c/p>\n\u003cp>\"It was a very messy process,\" Dyson recalled.\u003c/p>\n\u003cp>Most people, particularly those who are suffering from serious illness, don't have the resources to hire an assistant or \u003ca href=\"https://picnichealth.com/\">pay a company\u003c/a> to pull together their medical information.\u003c/p>\n\u003cp>\u003ca href=\"http://www.brookings.edu/blogs/techtank/posts/2015/04/28-health-record-copying-fees\">In addition, reports have shown that some providers will charge fees\u003c/a> of over $1.50 per page of a medical record, which can result in a total bill of in excess of $1,000. Moreover, many people face long wait-times and reports are often filled with scrawled notes and medical jargon.\u003c/p>\n\u003cp>\u003cstrong>Can Technology Make a Difference?\u003c/strong>\u003c/p>\n\u003cp>But patient advocates like Hallisy are optimistic that patient data will flow more easily as health care shifts from paper-based to digital systems.\u003c/p>\n\u003cp>It costs far less for a hospital to reproduce an electronic copy of a document than to print it. And logically speaking, it should be far more efficient to perform a computer-based search than search through a stack of files.\u003c/p>\n\u003cfigure id=\"attachment_2561\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2561\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/medical-dat-800x598.jpg\" alt=\"Hallisy stacked her daughter's medical reports\" width=\"800\" height=\"598\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-800x598.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-1180x881.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/medical-dat-960x717.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Hallisy stacked her daughter's medical reports \u003ccite>(Julia Hallisy)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>But this is easier said than done.\u003c/p>\n\u003cp>Many hospitals and clinics have been reluctant to invest in web tools that would make it more seamless for patients to access their medical information online. And electronic medical records cannot \u003ca href=\"http://ww2.kqed.org/futureofyou/broken-medical-records\">be efficiently or securely shared between doctors\u003c/a>, making it difficult to collect the records from various hospitals and clinics.\u003c/p>\n\u003cp>Instead, many patients today will be deferred to a web \"portal\" of sorts, \u003ca href=\"http://www.epicpc.com/patient-portal/\">like Epic's MyChart\u003c/a>, to view fragments of their medication information.\u003c/p>\n\u003cp>But many of these portals are outdated, said former Department of Health and Human Services technology chief Bryan Sivak.\u003c/p>\n\u003cp>\"Many offer little useful functionality and are difficult to use,\" said Sivak. \"Frankly, they could be designed much better.\"\u003c/p>\n\u003cp>Some hospitals have argued that patients aren't accessing these portals, so they must be indifferent. Why bother investing in more modern technology?\u003c/p>\n\u003cp>\"You often hear the argument that not every patient wants to spend the time,\" said Joseph Smith, a cardiologist and chief medical officer for \u003ca href=\"http://www.westhealth.org/institute\">West Health\u003c/a>, a nonprofit medical research organization.\u003c/p>\n\u003cp>\"And not every hospital has been able to make it through the technical requirements as we shift away from paper,\" he said. \"We are in an awkward time.\"\u003c/p>\n\u003cp>\u003cstrong>\"A Slap in the Face to Patient Rights\"\u003c/strong>\u003c/p>\n\u003cp>For Hallisy and other patient advocates, hospitals are showing signs of giving up on patients -- without investing in user-friendly tools and education programs.\u003c/p>\n\u003cp>And the proposed rule change is yet another example of the government and health sector folding its cards too soon, say advocates.\u003c/p>\n\u003cp>\"We needed to give providers a high enough threshold [5 percent], so they would do the work and incorporate patient facing tools into the practice,\" said Arien Malec, who worked as technology coordinator for the \u003ca href=\"http://www.hhs.gov/\">department of Health and Human Services. \u003c/a>\u003c/p>\n\u003cp>\"Now, they won't have to tell any patients. If they can’t find out how to access their medical record, the hospital doesn’t have to help them,\" he said.\u003c/p>\n\u003cp>Hallisy fears that hospitals may slash budgets for patient-facing tools to access medical data.\u003c/p>\n\u003cfigure id=\"attachment_2567\" class=\"wp-caption aligncenter\" style=\"max-width: 800px\">\u003cimg class=\"size-medium wp-image-2567\" src=\"http://ww2.kqed.org/futureofyou/wp-content/uploads/sites/13/2015/04/regina-holliday-800x600.jpg\" alt=\"Regina Holliday uses art to spread the word about patient rights \" width=\"800\" height=\"600\" srcset=\"https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-800x600.jpg 800w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-400x299.jpg 400w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-1180x883.jpg 1180w, https://ww2.kqed.org/app/uploads/sites/13/2015/04/regina-holliday-960x719.jpg 960w\" sizes=\"(max-width: 800px) 100vw, 800px\">\u003cfigcaption class=\"wp-caption-text\">Regina Holliday uses art to spread the word about patient rights \u003ccite>(Regina Holliday)\u003c/cite>\u003c/figcaption>\u003c/figure>\n\u003cp>Holliday agrees: \"There's a bad joke circulating that the one person could be a hospital staff-member, like a chief nursing officer.\"\u003c/p>\n\u003cp>Holliday's husband died of kidney cancer in 2009. During his hospitalization, she requested to see a copy of his medical records, but the hospital informed her that it would take 21 days. As Holliday frequently points out, three weeks is a long time to wait for patients in critical condition.\u003c/p>\n\u003cp>\u003cstrong>Ownership versus Access\u003cbr>\n\u003c/strong>\u003c/p>\n\u003cp>Technically speaking, patients don't own their medical record. Their doctors do.\u003c/p>\n\u003cp>And that has led to much of the complications around patient data rights.\u003c/p>\n\u003cp>In the policy world, questions often arise like, who owns the medical record data if a patient has multiple doctors? And who has the right to delete it or bar electronic access? And as patients start generating medical information from the latest apps and devices, will they own that -- or would the developer?\u003c/p>\n\u003cp>Moreover, it still remains a contested issue about which parties or groups are responsible for educating patients about the value of access to their medical record. Some have pointed the finger at patient advocates; some say it's the responsibility of the physician or the federal government.\u003c/p>\n\u003cp>But setbacks aside, some industry insiders are hopeful that the health sector will find answers in the coming years, \u003ca href=\"http://ww2.kqed.org/futureofyou/2015/03/13/startups-entrepreneurs-try-to-solve-medical-records-debacle/\">particularly given the recent outpouring of patient-focused tools\u003c/a> from Silicon Valley and other tech hubs.\u003c/p>\n\u003cp>\"It gets a little better every year. It's baby steps in health IT,\" said Dan Haley, a regulatory affairs expert at electronic health record company \u003ca href=\"http://athenahealth.com/\">AthenaHealth\u003c/a>.\u003c/p>\n\u003cp>But for her part, Hallisy has no intention of sitting back and waiting for change:\u003c/p>\n\u003cp>\u003c/p>\u003c/div>","attributes":{"named":{},"numeric":[]}},{"type":"component","content":"","name":"ad","attributes":{"named":{"label":"floatright"},"numeric":["floatright"]}},{"type":"contentString","content":"\u003cdiv class=\"post-body\">\u003cp>\u003c/p>\n\u003cp>\"This means the kind of work I do is more important than ever,\" she said. \"Medicine is changing. It could be interactive and collaborative, but we need the public's help.\"\u003c/p>\n\n\u003c/div>\u003c/p>","attributes":{"named":{},"numeric":[]}}],"link":"/futureofyou/2519/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death","authors":["3252"],"categories":["futureofyou_1060"],"tags":["futureofyou_303","futureofyou_298","futureofyou_299","futureofyou_302","futureofyou_301","futureofyou_305","futureofyou_307","futureofyou_306","futureofyou_297","futureofyou_80","futureofyou_296","futureofyou_304","futureofyou_300"],"featImg":"futureofyou_2569","label":"futureofyou"}},"programsReducer":{"possible":{"id":"possible","title":"Possible","info":"Possible is hosted by entrepreneur Reid Hoffman and writer Aria Finger. Together in Possible, Hoffman and Finger lead enlightening discussions about building a brighter collective future. The show features interviews with visionary guests like Trevor Noah, Sam Altman and Janette Sadik-Khan. Possible paints an optimistic portrait of the world we can create through science, policy, business, art and our shared humanity. It asks: What if everything goes right for once? How can we get there? Each episode also includes a short fiction story generated by advanced AI GPT-4, serving as a thought-provoking springboard to speculate how humanity could leverage technology for good.","airtime":"SUN 2pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Possible-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.possible.fm/","meta":{"site":"news","source":"Possible"},"link":"/radio/program/possible","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/possible/id1677184070","spotify":"https://open.spotify.com/show/730YpdUSNlMyPQwNnyjp4k"}},"1a":{"id":"1a","title":"1A","info":"1A is home to the national conversation. 1A brings on great guests and frames the best debate in ways that make you think, share and engage.","airtime":"MON-THU 11pm-12am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/1a.jpg","officialWebsiteLink":"https://the1a.org/","meta":{"site":"news","source":"npr"},"link":"/radio/program/1a","subscribe":{"npr":"https://rpb3r.app.goo.gl/RBrW","apple":"https://itunes.apple.com/WebObjects/MZStore.woa/wa/viewPodcast?s=143441&mt=2&id=1188724250&at=11l79Y&ct=nprdirectory","tuneIn":"https://tunein.com/radio/1A-p947376/","rss":"https://feeds.npr.org/510316/podcast.xml"}},"all-things-considered":{"id":"all-things-considered","title":"All Things Considered","info":"Every weekday, \u003cem>All Things Considered\u003c/em> hosts Robert Siegel, Audie Cornish, Ari Shapiro, and Kelly McEvers present the program's trademark mix of news, interviews, commentaries, reviews, and offbeat features. 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You ask the questions. You decide what Bay Curious investigates. 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You can also visit the MindShift website for episodes and supplemental blog posts or tweet us \u003ca href=\"https://twitter.com/MindShiftKQED\">@MindShiftKQED\u003c/a> or visit us at \u003ca href=\"/mindshift\">MindShift.KQED.org\u003c/a>","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Mindshift-Podcast-Tile-703x703-1.jpg","imageAlt":"KQED MindShift: How We Will Learn","officialWebsiteLink":"/mindshift/","meta":{"site":"news","source":"kqed","order":"2"},"link":"/podcasts/mindshift","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/mindshift-podcast/id1078765985","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5tZWdhcGhvbmUuZm0vS1FJTkM1NzY0NjAwNDI5","npr":"https://www.npr.org/podcasts/464615685/mind-shift-podcast","stitcher":"https://www.stitcher.com/podcast/kqed/stories-teachers-share","spotify":"https://open.spotify.com/show/0MxSpNYZKNprFLCl7eEtyx"}},"morning-edition":{"id":"morning-edition","title":"Morning Edition","info":"\u003cem>Morning Edition\u003c/em> takes listeners around the country and the world with multi-faceted stories and commentaries every weekday. Hosts Steve Inskeep, David Greene and Rachel Martin bring you the latest breaking news and features to prepare you for the day.","airtime":"MON-FRI 3am-9am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Morning-Edition-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.npr.org/programs/morning-edition/","meta":{"site":"news","source":"npr"},"link":"/radio/program/morning-edition"},"onourwatch":{"id":"onourwatch","title":"On Our Watch","tagline":"Police secrets, unsealed","info":"For decades, the process for how police police themselves has been inconsistent – if not opaque. In some states, like California, these proceedings were completely hidden. After a new police transparency law unsealed scores of internal affairs files, our reporters set out to examine these cases and the shadow world of police discipline. On Our Watch brings listeners into the rooms where officers are questioned and witnesses are interrogated to find out who this system is really protecting. Is it the officers, or the public they've sworn to serve?","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/On-Our-Watch-Podcast-Tile-703x703-1.jpg","imageAlt":"On Our Watch from NPR and KQED","officialWebsiteLink":"/podcasts/onourwatch","meta":{"site":"news","source":"kqed","order":"1"},"link":"/podcasts/onourwatch","subscribe":{"apple":"https://podcasts.apple.com/podcast/id1567098962","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5ucHIub3JnLzUxMDM2MC9wb2RjYXN0LnhtbD9zYz1nb29nbGVwb2RjYXN0cw","npr":"https://rpb3r.app.goo.gl/onourwatch","spotify":"https://open.spotify.com/show/0OLWoyizopu6tY1XiuX70x","tuneIn":"https://tunein.com/radio/On-Our-Watch-p1436229/","stitcher":"https://www.stitcher.com/show/on-our-watch","rss":"https://feeds.npr.org/510360/podcast.xml"}},"on-the-media":{"id":"on-the-media","title":"On The Media","info":"Our weekly podcast explores how the media 'sausage' is made, casts an incisive eye on fluctuations in the marketplace of ideas, and examines threats to the freedom of information and expression in America and abroad. For one hour a week, the show tries to lift the veil from the process of \"making media,\" especially news media, because it's through that lens that we see the world and the world sees us","airtime":"SUN 2pm-3pm, MON 12am-1am","imageSrc":"https://ww2.kqed.org/radio/wp-content/uploads/sites/50/2018/04/onTheMedia.png","officialWebsiteLink":"https://www.wnycstudios.org/shows/otm","meta":{"site":"news","source":"wnyc"},"link":"/radio/program/on-the-media","subscribe":{"apple":"https://itunes.apple.com/us/podcast/on-the-media/id73330715?mt=2","tuneIn":"https://tunein.com/radio/On-the-Media-p69/","rss":"http://feeds.wnyc.org/onthemedia"}},"our-body-politic":{"id":"our-body-politic","title":"Our Body Politic","info":"Presented by KQED, KCRW and KPCC, and created and hosted by award-winning journalist Farai Chideya, Our Body Politic is unapologetically centered on reporting on not just how women of color experience the major political events of today, but how they’re impacting those very issues.","airtime":"SAT 6pm-7pm, SUN 1am-2am","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Our-Body-Politic-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://our-body-politic.simplecast.com/","meta":{"site":"news","source":"kcrw"},"link":"/radio/program/our-body-politic","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/our-body-politic/id1533069868","google":"https://podcasts.google.com/feed/aHR0cHM6Ly9mZWVkcy5zaW1wbGVjYXN0LmNvbS9feGFQaHMxcw","spotify":"https://open.spotify.com/show/4ApAiLT1kV153TttWAmqmc","rss":"https://feeds.simplecast.com/_xaPhs1s","tuneIn":"https://tunein.com/podcasts/News--Politics-Podcasts/Our-Body-Politic-p1369211/"}},"pbs-newshour":{"id":"pbs-newshour","title":"PBS NewsHour","info":"Analysis, background reports and updates from the PBS NewsHour putting today's news in context.","airtime":"MON-FRI 3pm-4pm","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/PBS-News-Hour-Podcast-Tile-360x360-1.jpg","officialWebsiteLink":"https://www.pbs.org/newshour/","meta":{"site":"news","source":"pbs"},"link":"/radio/program/pbs-newshour","subscribe":{"apple":"https://itunes.apple.com/us/podcast/pbs-newshour-full-show/id394432287?mt=2","tuneIn":"https://tunein.com/radio/PBS-NewsHour---Full-Show-p425698/","rss":"https://www.pbs.org/newshour/feeds/rss/podcasts/show"}},"perspectives":{"id":"perspectives","title":"Perspectives","tagline":"KQED's series of of daily listener commentaries since 1991","info":"KQED's series of of daily listener commentaries since 1991.","imageSrc":"https://cdn.kqed.org/wp-content/uploads/2024/04/Perspectives-Podcast-Tile-703x703-1.jpg","officialWebsiteLink":"/perspectives/","meta":{"site":"radio","source":"kqed","order":"15"},"link":"/perspectives","subscribe":{"apple":"https://podcasts.apple.com/us/podcast/id73801135","npr":"https://www.npr.org/podcasts/432309616/perspectives","rss":"https://ww2.kqed.org/perspectives/category/perspectives/feed/","google":"https://podcasts.google.com/feed/aHR0cHM6Ly93dzIua3FlZC5vcmcvcGVyc3BlY3RpdmVzL2NhdGVnb3J5L3BlcnNwZWN0aXZlcy9mZWVkLw"}},"planet-money":{"id":"planet-money","title":"Planet Money","info":"The economy explained. 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