{"id":32971,"date":"2019-03-27T15:30:59","date_gmt":"2019-03-27T19:30:59","guid":{"rendered":"https:\/\/www.wework.com\/creator\/creator\/?p=32971"},"modified":"2020-02-26T14:28:30","modified_gmt":"2020-02-26T19:28:30","slug":"biden-cancer-initiative-turns-to-data-sharing-in-the-fight-against-cancer","status":"publish","type":"post","link":"https:\/\/www.wework.com\/ideas\/research-insights\/expert-insights\/biden-cancer-initiative-turns-to-data-sharing-in-the-fight-against-cancer","title":{"rendered":"Biden Cancer Initiative turns to data sharing in the fight against cancer"},"content":{"rendered":"\n<p><span style=\"font-weight: 400;\">After Joe Biden left office in 2017, he pledged to work to lower barriers to care for cancer patients by pressing researchers to share their data. It was a personal mission\u2014in 2015, his son Beau died from an aggressive brain tumor. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">The former vice president furthered that mission when his Biden Cancer Initiative\u2014the nonprofit he started with his wife, Dr. Jill Biden\u2014partnered with WeWork to launch <a href=\"https:\/\/www.wework.com\/creator\/start-your-business\/biden-cancer-initiative-convenes-cancer-research-collaboration-hubs\/\">Communication Hubs<\/a>. WeWork provides the physical space for researchers to collaborate on cancer including prevention, detection, diagnosis, research, and care.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Biden spoke about the need for an interconnected approach to fighting cancer to an audience of researchers, patients, caretakers, and survivors at <\/span><a href=\"https:\/\/www.wework.com\/buildings\/85-broad-st--new-york-city--NY\"><span style=\"font-weight: 400;\">WeWork 85 Broad St<\/span><\/a><span style=\"font-weight: 400;\"> in New York City on Tuesday.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cWe should be able to say that there\u2019s widespread sharing of research data, and that medical records are easier and cheaper to get in a way that patients can share them for other research, but we can\u2019t say that,\u201d he said. \u201cWe should be able to say that your doctor in Missoula, Montana, has all the tools needed to treat whichever cancer you may have just as a doctor at [New York\u2019s] Memorial Sloan Kettering Cancer Center does\u2026 but we can\u2019t.\u201d<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">According to BCI, a lack of open data sharing and aggregation stands in the way of patient access to information and care. Patient-led sharing, in which consumers are able to directly retrieve their medical data from providers, allows them to effectively improve their own care. But it\u2019s not easy. Privacy protection, for one, is a primary concern.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Biden experienced this first-hand when he tried to obtain Beau\u2019s cancer genome sequencing\u2014a view of the unique mutations present in cancer tissue\u2014without success.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cWhen cancer patients\u2019 data is aggregated, it holds the promise to improve care for more patients so their treatment can be informed by a collective experience of cancer, rather than by just cases that individual doctors have seen,\u201d Biden said. \u201cBut patients are forced to jump through hoops on top of fighting for their lives to receive their own medical data records.\u201d<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Biden outlined three ways to improve data sharing on which BCI is already at work.<\/span><\/p>\n\n\n\n<figure class=\"wp-block-image\"><img decoding=\"async\" src=\"\/ideas\/wp-content\/uploads\/sites\/4\/2019\/03\/wework-creator-biden-cancer-initiative-event-inline-resized-800x571.jpg\" alt=\"\" class=\"wp-image-32976\"\/><figcaption>&#8220;Cancer centers need to step up,&#8221; former Vice President Joe Biden said during a recent talk with Biden Cancer Initiative at WeWork 85 Broad St in New York City.<\/figcaption><\/figure>\n\n\n\n<p><b>1. Encourage cancer centers to go beyond the bare minimum when providing patients with their data. <\/b>\u201cCancer centers need to step up,\u201d he said. \u201cThey should provide easy, transparent ways for patients to request and obtain their medical records in whatever form they wish.\u201d Academic science still rewards individual accomplishments over team discoveries, leading to a culture that deters the wider sharing of results.<\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">BCI identifies incentives to support data sharing across academia, cancer centers, and publishers. It has compiled more than 10 working group members nationwide\u2014from industry-leading cancer centers to nonprofit organizations\u2014to develop new standards,.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cTo all you cancer center CEOs out there,\u201d he said, \u201cplease join us.\u201d<\/span><\/p>\n\n\n\n<p><b>2. Promote patient education and empowerment as it involves their own data.<\/b> The goal is simple, he said: \u201cEnable cancer patients everywhere to share their information samples with researchers, anywhere and everywhere.\u201d<\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">BCI has partnered with <\/span><a href=\"https:\/\/joincountmein.org\/about\"><span style=\"font-weight: 400;\">Count Me In<\/span><\/a><span style=\"font-weight: 400;\">, a new research-based nonprofit with a goal to \u201cengage\u201d more than 100,000 patients living with all major cancer types. This engagement, in part, enables patients to share their clinical information to help researchers detect patterns in cancer progression and response to treatment across a large sample of people. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">But this is where privacy comes into play: The Health Insurance Portability and Accountability Act (HIPAA) limits information sharing <\/span><a href=\"https:\/\/www.healthit.gov\/topic\/interoperability\/how-hipaa-supports-data-sharing\"><span style=\"font-weight: 400;\">to a degree<\/span><\/a><span style=\"font-weight: 400;\">, even though a reported <\/span><a href=\"https:\/\/healthitsecurity.com\/news\/are-patients-concerned-with-their-healthcare-data-security\"><span style=\"font-weight: 400;\">74 percent of consumers<\/span><\/a><span style=\"font-weight: 400;\"> trust hospitals with health-care data security. Count Me In aims to resolve this discrepancy.<\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Apple is on board, too: In 2018, the technology company announced a partnership with 13 major health-care systems, including Johns Hopkins, that allows Apple to download patients\u2019 medical data onto its devices with patient permission. <\/span><\/p>\n\n\n\n<p><b>3. Capture patient data more consistently across cancer centers. <\/b><span style=\"font-weight: 400;\">When Beau was undergoing treatment, he took part in a clinical trial at a cancer center where he was not receiving his regular treatment. The most efficient way to transmit records between centers, said Biden, was to personally take a picture of the documentation and transmit it via cellphone. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">The better alternative is to develop a set of cancer-specific data elements that can be incorporated into electronic health records across cancer centers. Such elements could improve what doctors can learn across patient populations. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">Intermountain Healthcare\u2014a Utah-based system of 23 hospitals, 170 clinics, and a medical group with close to 2,300 physicians\u2014will be the first cancer center to pilot these standards starting in June. Others are already eager to sign up. <\/span><\/p>\n\n\n\n<p><span style=\"font-weight: 400;\">\u201cWe believe that we can make progress in these areas because of the incredible response we\u2019ve seen thus far,\u201d said Biden. \u201cWe thought it\u2019d be a much harder pull, but it\u2019s not. People feel it. They feel the movement to make progress. They feel the urgency of now. It gives them hope.\u201d<\/span><\/p>\n\n\n\n<p><\/p>\n","protected":false},"excerpt":{"rendered":"<p>The practice could help update the entire healthcare system, including getting closer to eliminating cancer<\/p>\n","protected":false},"author":905,"featured_media":32975,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[43906,43901],"tags":[513,512],"class_list":["post-32971","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-expert-insights","category-research-insights","tag-innovation","tag-impact"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v22.4 (Yoast SEO v25.3.1) - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>Biden Cancer Initiative turns to data sharing in the fight against cancer<\/title>\n<meta name=\"description\" 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