{"id":20285,"date":"2018-01-25T10:08:48","date_gmt":"2018-01-25T15:08:48","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=20285"},"modified":"2018-01-30T15:14:46","modified_gmt":"2018-01-30T20:14:46","slug":"apples-new-health-data-download-feature-nice-start-but-little-use-for-sick-people","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2018\/01\/apples-new-health-data-download-feature-nice-start-but-little-use-for-sick-people.html","title":{"rendered":"Apple&#8217;s new health data download feature: nice start, but little use for sick people"},"content":{"rendered":"<p>The health IT sphere is abuzz with Apple&#8217;s groundbreaking announcement yesterday of the new ability, in the beta version of iOS 11.3, to download lab results, allergies, &#8220;problem lists,&#8221; etc. from\u00a0<strong><em>multiple\u00a0<\/em><\/strong>hospitals. So far twelve hospitals have signed on as participants. You can read <a href=\"https:\/\/www.apple.com\/newsroom\/2018\/01\/apple-announces-effortless-solution-bringing-health-records-to-iPhone\/\" target=\"_blank\" rel=\"noopener\">Apple&#8217;s announcement<\/a> or <a href=\"https:\/\/www.google.com\/search?q=apple+medical+records\" target=\"_blank\" rel=\"noopener\">search for it on Google<\/a>.<\/p>\n<p><em>[Edited for clarity &amp; accuracy 1\/30:]\u00a0<\/em>It&#8217;s a step in the right direction, but our Society for Participatory Medicine is about fully empowered patient-clinician partnerships, and this won&#8217;t do much to help: Apple says it &#8220;makes it easy for consumers to see their <strong><em>available<\/em><\/strong> medical data,&#8221; which ain&#8217;t much, nowhere near as &#8220;huge&#8221; as some are saying. What we really need is <a href=\"http:\/\/opennotes.org\" target=\"_blank\" rel=\"noopener\">OpenNotes<\/a>, which we&#8217;ve written about <a href=\"https:\/\/participatorymedicine.org\/epatients\/?s=opennotes\" target=\"_blank\" rel=\"noopener\">many times<\/a>. SPM board member Peter Elias MD responded perfectly to CNBC&#8217;s @ChrissyFarr&#8217;s excited tweet:<br \/>\n<!--more--><\/p>\n<blockquote class=\"twitter-tweet\" data-width=\"550\" data-dnt=\"true\">\n<p lang=\"en\" dir=\"ltr\">If limited to Apple\u2019s ecosystem it is an Apple product, not a healthcare product. And based on current info, the data set is tiny and helpful only to those with minimal needs.<\/p>\n<p>&mdash; Peter Elias (@pheski) <a href=\"https:\/\/twitter.com\/pheski\/status\/956532688495706112?ref_src=twsrc%5Etfw\">January 25, 2018<\/a><\/p><\/blockquote>\n<p><script async src=\"https:\/\/platform.twitter.com\/widgets.js\" charset=\"utf-8\"><\/script><\/p>\n<p>Farr&#8217;s\u00a0<a href=\"https:\/\/www.cnbc.com\/2018\/01\/24\/apple-coo-williams-says-new-health-record-beta-is-right-thing-to-do.html\" target=\"_blank\" rel=\"noopener\">CNBC article<\/a> says it &#8220;lets users download their health records, store them safely and show them to a doctor, caregiver or friend.&#8221; Well, no:\u00a0the New York Times correctly <a href=\"https:\/\/www.nytimes.com\/2018\/01\/24\/technology\/Apple-iPhone-medical-records.html\" target=\"_blank\" rel=\"noopener\">said<\/a> &#8220;automatically download and see <em><strong>parts<\/strong><\/em> of their medical records.&#8221; Specifically, Apple says it includes &#8220;allergies, conditions, immunizations, lab results, medications, procedures and vitals.&#8221; That&#8217;s useful but it&#8217;s the same paltry data set you can already see in your patient portal, which is no use if you&#8217;ve actually got a\u00a0<em>problem<\/em>.<\/p>\n<p>Coincidentally, last week [well before this announcement] SPM member Liz Salmi (a brain tumor patient) tweeted a perfect comparison &#8211; on the left is her doctor\u2019s notes which she gets after making a special request to her physicians. Her point is that it would be much easier to get this detailed information if her health system were sharing notes:<\/p>\n<blockquote class=\"twitter-tweet\" data-width=\"550\" data-dnt=\"true\">\n<p lang=\"en\" dir=\"ltr\">Here it is: My official guide to the difference between clinical notes and the After Visit Summary. <br \/>&#8211; When clinical notes are shared w\/patients it is called <a href=\"https:\/\/twitter.com\/hashtag\/opennotes?src=hash&amp;ref_src=twsrc%5Etfw\">#opennotes<\/a>. Lots of evidence that notes are helpful for patients and care partners.<br \/>&#8211; The After Visit Summary is a joke. <a href=\"https:\/\/t.co\/p2fQFPKM2N\">pic.twitter.com\/p2fQFPKM2N<\/a><\/p>\n<p>&mdash; Liz Salmi (@TheLizArmy) <a href=\"https:\/\/twitter.com\/TheLizArmy\/status\/954521177338204161?ref_src=twsrc%5Etfw\">January 20, 2018<\/a><\/p><\/blockquote>\n<p><script async src=\"https:\/\/platform.twitter.com\/widgets.js\" charset=\"utf-8\"><\/script><\/p>\n<p>I was interviewed about the Apple news late last night by the San Diego Union-Tribune on behalf of SPM, and\u00a0<a href=\"http:\/\/www.sandiegouniontribune.com\/news\/health\/sd-no-apple-medicalrecords-20180124-story.html\">said<\/a>\u00a0that while this is a step in the right direction, what people with a problem actually need is access to the whole medical record, not more of what little data we can already access in the portal:<\/p>\n<blockquote><p>\u201cWhat Apple has announced is a strong positive step in the direction of democratizing health care. Knowledge is power, information is power and access to information increases a family\u2019s ability to manage their own care,\u201d deBronkart said.<\/p>\n<p>&nbsp;<\/p>\n<p>He is among those asking not just for test results and medication lists but for access to the progress notes that doctors, nurses and other medical patients enter into the medical record with each and every visit. Patients, advocates argue, should get a chance to see what their providers write about them and check for accuracy. Too often, deBronkart said, many have spotted typos or erroneous information that could lead to harm.<\/p>\n<p>&nbsp;<\/p>\n<p>\u201cI know people who have discovered important errors that either caused or prevented death in their family members,\u201d he said.<\/p><\/blockquote>\n<p>Information is power; a little information is a little power; to withhold the rest is to withhold power.<\/p>\n<p>By the way, I&#8217;m sure it won&#8217;t be long before we hear users of this Apple product discovering errors even in the few data items this will offer. In my Google Health fiasco nine years ago I discovered that my condition list included all kinds of things that were years out of data. That&#8217;s a good thing &#8211; with luck users will then realize how important it is to be an active, engaged e-patient!<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The health IT sphere is abuzz with Apple&#8217;s groundbreaking announcement yesterday of the new ability, in the beta version of iOS 11.3, to download lab results, allergies, &#8220;problem lists,&#8221; etc. [&hellip;]<\/p>\n","protected":false},"author":4,"featured_media":20292,"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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"coauthors":[8070],"class_list":["post-20285","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-general"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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