{"id":12466,"date":"2012-06-12T13:13:56","date_gmt":"2012-06-12T17:13:56","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=12466"},"modified":"2012-06-12T13:59:58","modified_gmt":"2012-06-12T17:59:58","slug":"who-owns-your-data-why","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2012\/06\/who-owns-your-data-why.html","title":{"rendered":"Who owns your data? Why?"},"content":{"rendered":"<p>I&#8217;ve received an interesting request: Women Executives in Healthcare, a Hartford professional organization, will hold a meeting this fall themed around &#8220;Who owns your data?&#8221; And they asked, what are patients&#8217; top five issues?<\/p>\n<p>Of course <em>I <\/em>have plenty of opinions, but as with all things participatory, it&#8217;s better if we don&#8217;t assume all patients want the same thing or think the same. So, what do <em>you <\/em>think? Here&#8217;s some soup starter; have at it:<br \/>\n<!--more--><\/p>\n<ul>\n<li><strong>Data quality is essential to any IT &#8211; especially health IT.<\/strong><\/li>\n<ul>\n<li>The purpose of recording <em>any <\/em>information (on paper or computer) is so someone can read it back later and do something based on what it says. When the recorded info is wrong, that&#8217;s a big problem! Two quick examples:<\/li>\n<ul>\n<li>My mom&#8217;s hyperthyroid was transcribed into a new system as hypothyroid; the mistake could have killed her. But my sisters were on top of it and prevented harm.<\/li>\n<li>Years earlier, when my wife first gave birth, her chart was missing her penicillin allergy; she herself caught it when they tried to shoot her up.<\/li>\n<\/ul>\n<li>Every single patient I&#8217;ve spoken with who&#8217;s looked through their medical records has found mistakes.<\/li>\n<li>Meanwhile, no hospital I know of says clinicians have time to hunt through and fix things.<\/li>\n<li>My two cents: let patients help!<\/li>\n<li>See also last month&#8217;s excellent NeHC webcast on this, below.<\/li>\n<\/ul>\n<li><strong>Current reality: consumers <em>often <\/em>report stubbornness when they ask to see the data:<\/strong> too many hospitals think it&#8217;s their property. (We&#8217;ve blogged such anecdotes here several times.)<\/li>\n<ul>\n<li>When a relative of mine was hospitalized in December, they said we could see the chart <em>after <\/em>he was released. I&#8217;m sure glad my mom&#8217;s facility didn&#8217;t say that.<\/li>\n<li>It seems apparent that as long as a provider feels it&#8217;s legally none of my business, we won&#8217;t be allowed to participate in data quality. When it&#8217;s <em>your <\/em>mother or child, that&#8217;s a biiiig problem.<\/li>\n<li>Note that some providers get it, e.g. Dr. Ken Mandl of Boston Children&#8217;s Hospital (a participant in the webcast below, though he mostly didn&#8217;t talk about that.) They <em>actively <\/em>invite the family to participate in correcting errors.<\/li>\n<\/ul>\n<li><strong>Controlling costs: Insurance billing fraud and errors.<\/strong><\/li>\n<ul>\n<li>Three years ago <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2009\/04\/imagine-if-someone-had-been-managing-your-data-and-then-you-looked.html\" target=\"_blank\">I blogged about<\/a> a substantial array of garbage in my insurance records. It was such a revelation that it ended up on the front page of the Boston Globe &#8211; not common for your average blog post.<\/li>\n<li>Not only could wrong insurance data be used against a consumer as pre-existing conditions that <em>don&#8217;t <\/em>exist; a future system could read such data and draw dangerously false conclusions.<\/li>\n<li>Again, the NeHC webcast below mentions what Dr. Mike Fuller of Greenville Memorial Hospital calls &#8220;the perpetual chart lie&#8221; and David Kibbe&#8217;s wonderful tale of &#8220;the Wicked EMR.&#8221;<\/li>\n<\/ul>\n<li><strong>If patients own it, they&#8217;ll have a right to know where it is<\/strong> and who&#8217;s doing what with it.<\/li>\n<ul>\n<li>I recently met Heather Wellington of <a href=\"http:\/\/www.patientsaspartners.com\/\" target=\"_blank\">Patients As Partners<\/a>, whose 29 year old twin Hillary died in February of Hodgkins Lymphoma, a disease that usually doesn&#8217;t kill. One factor in the complex mix was that in the transfer from one facility to the other, the records fell into a hole, and each facility thought the other had the ball. By the time the family said &#8220;Hey you guys, what&#8217;s next,&#8221; six weeks had gone by.<\/li>\n<\/ul>\n<\/ul>\n<p>In the end, in my view, it&#8217;s about working together to make health care more effective, safe, and efficient. <strong>The importance of this is not always apparent until your time comes:<\/strong> I often say in speeches, &#8220;Patient is not a third person word.&#8221;<\/p>\n<p>In <a href=\"http:\/\/participatorymedicine.org\" target=\"_blank\">our Society<\/a> we say: <\/p>\n<blockquote><p>Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.<\/p><\/blockquote>\n<p>Many observers are now saying that patients are the most under-used resource in healthcare. Dr. Warner Slack has been saying that since in the 1970s; one of his proteges is Dr. Danny Sands, my primary physician and President of SPM, who says &#8220;How can patients participate if they can&#8217;t see the same information?&#8221;<\/p>\n<p>Abington Memorial Hospital, near Philadelphia, gets it: every day they print out <a href=\"http:\/\/epatientdave.com\/2010\/12\/06\/abington-memorial-already-has-a-shared-care-plan\/\" target=\"_blank\">a family-level list<\/a> of the day&#8217;s information, so the family can follow along (making sure meds happen on schedule, etc). I asked if the family ever finds mistakes in the printout, and they said &#8220;Oh, all the time.&#8221;<\/p>\n<p>In contrast to this, at a dinner in January I sat next to the wife of a hospital&#8217;s Chief Financial Officer, and she said that she&#8217;s been trying for <em>years <\/em>to get her husband&#8217;s own hospital to correct a medication error in her chart.<\/p>\n<p>My bottom line: health IT <em>depends <\/em>on data quality; let patients help.<\/p>\n<p>Those are my thoughts; here are views from two other SPM members. Then we&#8217;ll invite yours in comments.<\/p>\n<h2>Hugo Campos: Preventing cardiac episodes<\/h2>\n<p>SPM member Hugo Campos as a device implanted in his chest that keeps him from dying when he has an episode. He wants to go one better: instead of <em>surviving <\/em>episodes, he wants to learn how to <em>prevent <\/em>them, by understanding the data stream coming out of the device.\u00a0<a href=\"http:\/\/www.e-patients.net\/?s=hugo+campos\" target=\"_blank\">Many blog posts here<\/a> have documented his TEDx Cambridge talk and his appearances on National Public Radio etc.<\/p>\n<p>(Notice: that&#8217;s an e-patient &#8211; actively working to be responsible for his well-being.)<\/p>\n<h2>Scott Strange: Interoperability<\/h2>\n<p>SPM member Scott Strangely pointed out another vital issue: his health as a diabetic is affected by how \u00a0well the available information is harvested and analyzed to help him control his health. (Note: another e-patient, actively working to be responsible for his condition.)<\/p>\n<p>His problem is that all the different devices he has won&#8217;t talk to each other, and since he doesn&#8217;t <em>own <\/em>the data, he can&#8217;t dictate a solution. On the SPM member listerv, he wrote:<\/p>\n<blockquote><p>Diabetics see the interoperability issue in spades. Pumps, meters, CGMS systems that don&#8217;t talk to each other, requiring the patient to compare printouts from multiple system or hack together their own spreadsheets to do some pattern analysis.<\/p>\n<p>We&#8217;ve just now started to see a couple of tools\/sites that will allow you to upload data from almost any device so you can get an entire picture of food intake\/insulin doses\/glucose readings and still have hair left.<\/p><\/blockquote>\n<p>Both Hugo and Scott want to \u00a0play a more active role in staying healthy, and I&#8217;m sure many patients, parents and families would like to do the same. But they&#8217;re impeded from doing so, for reasons that often boil down to one simple fact: <em>they <\/em>don&#8217;t legally own the data, so it&#8217;s not theirs to make use of.<\/p>\n<h2>Your turn.<\/h2>\n<p>What do you think are the top five issues about who own your data?<br \/>\n____________<\/p>\n<p>Here&#8217;s the NeHC webcast on patient participation in data quality:<br \/>\n<object width=\"640\" height=\"480\" classid=\"clsid:d27cdb6e-ae6d-11cf-96b8-444553540000\" codebase=\"https:\/\/download.macromedia.com\/pub\/shockwave\/cabs\/flash\/swflash.cab#version=6,0,40,0\"><param name=\"allowFullScreen\" value=\"true\" \/><param name=\"allowscriptaccess\" value=\"always\" \/><param name=\"src\" value=\"https:\/\/www.youtube.com\/v\/MJ4p07u_eqA?version=3&amp;hl=en_US&amp;rel=0\" \/><param name=\"allowfullscreen\" value=\"true\" \/><\/object><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>I&#8217;ve received an interesting request: Women Executives in Healthcare, a Hartford professional organization, will hold a meeting this fall themed around &#8220;Who owns your data?&#8221; And they asked, what are [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":15632,"comment_status":"open","ping_status":"open","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":[367,59,62,2304],"tags":[],"coauthors":[],"class_list":["post-12466","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-medical-records","category-policy-issues","category-reforming-healthcare","category-why-pm"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Who owns your data? 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