{"id":20949,"date":"2018-09-28T23:54:06","date_gmt":"2018-09-29T03:54:06","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=20949"},"modified":"2018-09-29T12:38:39","modified_gmt":"2018-09-29T16:38:39","slug":"spm2018-hot-topic-can-a-market-for-health-data-also-protect-patients-rights-to-their-data","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2018\/09\/spm2018-hot-topic-can-a-market-for-health-data-also-protect-patients-rights-to-their-data.html","title":{"rendered":"#SPM2018 Hot Topic: Can a Market for Health Data also Protect Patients’ Rights to Their Data?"},"content":{"rendered":"

Here\u2019s the latest in a\u00a0series of posts by and about<\/a>\u00a0the outstanding topics we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0Register here<\/a>. (Our\u00a0#SPM2018 series<\/a>\u00a0has more about the speakers and activities.)<\/em><\/p>\n

We know that researchers need access to good quality data. With more efficient access to data sources, medical researchers can spend more time on analysis that enhances our medical knowledgebase and less time compiling data.<\/p>\n

We also know that patients have a right to privacy. HIPAA and other federal laws are designed to protect patient privacy and rights to their data, yet we hear of frequent breaches of HIPAA and we learn of new ways that our de-identified healthcare data are being aggregated to create high-value commercial products that may include enough data to re-identify individuals.<\/p>\n

In a session devoted to the value and risks of markets for secondary health data at SPM\u2019s 2nd Annual Conference in October, Dr. Bill Marder, chief data strategist at IBM Watson Health, will present a keynote address, \u201cData Ocean or 1,000 Data Lakes: The Balkanization of Health Data<\/em>.\u201d<\/p>\n

A key question on my mind, which I expect Bill\u2019s talk to illuminate is: How do we find the right balance between the benefits of secondary data to researchers and the risks to patient privacy<\/em>?<\/p>\n

As an SPM board member, I have the privilege of introducing Bill, who will speak about the value of aggregated health data from the researcher\u2019s perspective. He is a widely published health economist who has directed research services for government, private sector, and public policy organizations for over 25 years.<\/p>\n

Bill was\u00a0quoted in Adam Tanner\u2019s book,\u00a0Our Bodies, Our Data,<\/em><\/strong>\u00a0as being a \u201ccheerful capitalist\u201d about a market for health data. I recently asked him to\u00a0expand on that characterization and how it relates to the topics he plans to cover at the SPM conference. He replied, \u201cCreating research-ready databases is a costly activity.\u00a0 Somebody has to pay the bill.\u00a0 That bill can be a real challenge, especially if only non-profit entities are allowed to pay.\u201d<\/p>\n

\n

Join Us for #SPM2018 in Boston October 17<\/h3>\n

Learn more about SPM\u2019s\u00a0second annual conference<\/a>\u00a0on Oct. 17 in Boston or\u00a0register here today<\/strong><\/a>\u00a0($100 for members\/$150 for non-members). In our early years it\u2019s priced as a great bargain for a full day. And see this blog\u2019s\u00a0#SPM2018 series<\/a>\u00a0for more about the speakers and activities.<\/p>\n

\u00a0<\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Here\u2019s the latest in a\u00a0series of posts by and about\u00a0the outstanding topics we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0Register here. (Our\u00a0#SPM2018 series\u00a0has more about the speakers and activities.) We know that researchers need access to good quality data. With more […]<\/p>\n","protected":false},"author":4,"featured_media":20963,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","enabled":false}}},"categories":[367,8110,8116],"tags":[],"coauthors":[8121],"jetpack_publicize_connections":[],"yoast_head":"\n#SPM2018 Hot Topic: Can a Market for Health Data also Protect Patients' Rights to Their Data? - SPM Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/participatorymedicine.org\/epatients\/2018\/09\/spm2018-hot-topic-can-a-market-for-health-data-also-protect-patients-rights-to-their-data.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"#SPM2018 Hot Topic: Can a Market for Health Data also Protect Patients' Rights to Their Data? - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"Here\u2019s the latest in a\u00a0series of posts by and about\u00a0the outstanding topics we\u2019ve lined up for the Society for Participatory Medicine\u2019s second annual conference on\u00a0Oct. 17\u00a0in Boston, attached to the prestigious Connected Health conference.\u00a0Register here. 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