{"id":16154,"date":"2014-03-27T16:00:26","date_gmt":"2014-03-27T20:00:26","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=16154"},"modified":"2014-03-28T08:26:52","modified_gmt":"2014-03-28T12:26:52","slug":"new-paradigm-in-data-sharing-and-analysis","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2014\/03\/new-paradigm-in-data-sharing-and-analysis.html","title":{"rendered":"New paradigm in data sharing and analysis?"},"content":{"rendered":"<p>A <em>Perspectives<\/em> piece I wrote was published this week by iHealthBeat &#8211; <a href=\"http:\/\/www.ihealthbeat.org\/perspectives\/2014\/unlocking-the-power-of-health-data\" target=\"_self\"><em>Unlocking the Power of Health Data<\/em><\/a>. In it I argue for patient-controlled sharing of rich data, as opposed to HIPAA-regulated stripping of identifiers in order to eliminate the risk to patient privacy as data is shared for research and other purposes. Googler <a href=\"http:\/\/techcrunch.com\/2014\/03\/19\/larry-pages-wish-to-make-all-health-data-public-has-big-benefits-and-big-risks\/\" target=\"_self\">Larry Page<\/a> and <a href=\"http:\/\/www.huffingtonpost.com\/josh-stevens\/todays-social-fabric-of-h_b_5008102.html\" target=\"_self\">Josh Stevens<\/a> of Keas have argued recently in favor of broader uses of health data, but the issue of HIPAA keeps coming up in those conversations. Most connected patients seem comfortable with the idea of sharing health data, and as more of us get connected, this sentiment is only likely to spread.<br \/>\n<!--more--><br \/>\nAs I wrote at iHealthBeat:<\/p>\n<p style=\"padding-left: 30px;\">I have discussed the <a href=\"http:\/\/www.healthblawg.com\/2013\/09\/david-harlows-hipaa-and-hitech-presentation-at-stratarx.html\" target=\"_blank\">patient donation of data<\/a> before, and the first objection I heard was from a data scientist who worried that the volume of patient records collected in this manner would be too small to yield any meaningful insights. While this may be true at first, I believe that over time patients will come to prefer to set their own limits on data sharing rather than be stuck with the one-size-fits-none approach available under HIPAA. In addition, the data made available through these repositories will be more valuable than that available as de-identified data for research precisely because there are more identifiers attached.<\/p>\n<p>Are we ready for a new paradigm in data sharing and big data analysis? How do <em>you<\/em> balance the risks of sharing your own health data against the benefits of having the shared information helping others?<\/p>\n<p><em><a href=\"http:\/\/www.healthblawg.com\/david-harlow-jd-mph-principal-the-harlow-group-llc.html\">David Harlow<\/a>\u00a0is a health care lawyer and consultant at The Harlow Group LLC, and chairs the Society for Participatory Medicine\u2019s public policy committee. Check out<em> his home blog,\u00a0<a href=\"http:\/\/healthblawg.com\/\">HealthBlawg<\/a>, where a version of this post first appeared.\u00a0<\/em>You should follow him on Twitter:\u00a0<a href=\"http:\/\/twitter.com\/healthblawg\">@healthblawg<\/a>.<\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>A Perspectives piece I wrote was published this week by iHealthBeat &#8211; Unlocking the Power of Health Data. In it I argue for patient-controlled sharing of rich data, as opposed [&hellip;]<\/p>\n","protected":false},"author":11,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"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":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[12],"tags":[38,8,58,417,19,498,7709],"coauthors":[8292],"class_list":["post-16154","post","type-post","status-publish","format-standard","hentry","category-found-on-the-net","tag-data","tag-e-patients","tag-health-20","tag-health-data","tag-health-information","tag-health-information-technology","tag-medical-records"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>New paradigm in data sharing and analysis? - 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\/2014\/03\/new-paradigm-in-data-sharing-and-analysis.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"New paradigm in data sharing and analysis? - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"A Perspectives piece I wrote was published this week by iHealthBeat &#8211; Unlocking the Power of Health Data. In it I argue for patient-controlled sharing of rich data, as opposed [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/participatorymedicine.org\/epatients\/2014\/03\/new-paradigm-in-data-sharing-and-analysis.html\" \/>\n<meta property=\"og:site_name\" content=\"SPM Blog\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/participatorymedicine\" \/>\n<meta property=\"article:published_time\" content=\"2014-03-27T20:00:26+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2014-03-28T12:26:52+00:00\" \/>\n<meta name=\"author\" content=\"David Harlow\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@s4pm\" \/>\n<meta name=\"twitter:site\" content=\"@s4pm\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"David Harlow\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2014\\\/03\\\/new-paradigm-in-data-sharing-and-analysis.html#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2014\\\/03\\\/new-paradigm-in-data-sharing-and-analysis.html\"},\"author\":{\"name\":\"David Harlow\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/#\\\/schema\\\/person\\\/780ff6357aef66a2f9b85a807d78dd2d\"},\"headline\":\"New paradigm in data sharing and analysis?\",\"datePublished\":\"2014-03-27T20:00:26+00:00\",\"dateModified\":\"2014-03-28T12:26:52+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2014\\\/03\\\/new-paradigm-in-data-sharing-and-analysis.html\"},\"wordCount\":308,\"commentCount\":3,\"publisher\":{\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/#organization\"},\"keywords\":[\"data\",\"e-patients\",\"health 2.0\",\"Health Data\",\"health information\",\"Health Information Technology\",\"medical records\"],\"articleSection\":[\"Found on the net\"],\"inLanguage\":\"en-US\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2014\\\/03\\\/new-paradigm-in-data-sharing-and-analysis.html#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2014\\\/03\\\/new-paradigm-in-data-sharing-and-analysis.html\",\"url\":\"https:\\\/\\\/participatorymedicine.org\\\/epatients\\\/2014\\\/03\\\/new-paradigm-in-data-sharing-and-analysis.html\",\"name\":\"New paradigm in data sharing and analysis? 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