{"id":18231,"date":"2016-01-25T09:00:45","date_gmt":"2016-01-25T14:00:45","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=18231"},"modified":"2016-01-24T21:51:27","modified_gmt":"2016-01-25T02:51:27","slug":"proposal-for-a-truly-patient-centered-medical-record","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2016\/01\/proposal-for-a-truly-patient-centered-medical-record.html","title":{"rendered":"Proposal for a TRULY patient-centered medical record"},"content":{"rendered":"<div id=\"attachment_18233\" style=\"width: 310px\" class=\"wp-caption alignright\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-18233\" class=\"size-medium wp-image-18233\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/01\/Peter-Elias-with-patient-color-adjusted-300x225.jpg\" alt=\"Peter Elias MD viewing medical record with patient\" width=\"300\" height=\"225\" srcset=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/01\/Peter-Elias-with-patient-color-adjusted-300x225.jpg 300w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/01\/Peter-Elias-with-patient-color-adjusted-600x450.jpg 600w, https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/01\/Peter-Elias-with-patient-color-adjusted.jpg 720w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\" \/><p id=\"caption-attachment-18233\" class=\"wp-caption-text\">SPM board member Peter Elias MD viewing medical record with patient<\/p><\/div>\n<p style=\"padding-top: 0px;\">The other night I participated in a very useful Google+ hangout with SPM members Adrian Gropper\u00a0and Michael Mascia, and Michael Chen [of NOSH, explained below]. The discussion focused on a subject I think is incredibly important: the\u00a0<strong>patient-centered<\/strong>\u00a0health record.<\/p>\n<p style=\"padding-top: 0px;\">Really: patient-centered. Like, built\u00a0<em>around\u00a0<\/em>the patient &#8211; not a provider system built with supposed &#8220;patient-centered&#8221; thinking.<\/p>\n<p style=\"padding-top: 0px;\">This topic is hard to discuss without drowning in technical terms and acronyms. I consider myself fairly tech-savvy and still struggle. So I&#8217;m going to describe the idea\u00a0first without tech terms or acronyms, and then with some of the key jargon added, so more technical readers can see what we&#8217;re specifically proposing.<\/p>\n<p>The 55 minute YouTube replay of the hangout is embedded at the end of this post.\u00a0I think it is worth watching. Before watching it, consider reviewing the following basic information to help set the stage.<\/p>\n<h2>Our situation today<\/h2>\n<p>The current EHR model is that <strong>each office or institution<\/strong> owns and manages an electronic record that contains information about <strong>the patients in that system.<\/strong> Despite the obvious need and lots of talk, there has been little actual progress towards making these separate and mostly proprietary systems \u2018interoperable\u2019 and therefore able to share information. The result is that<br \/>\n<!--more--><\/p>\n<ul>\n<li>Clinicians routinely work with incomplete or outdated information.<\/li>\n<li>Patients are locked into their home system.<\/li>\n<li>It is extremely hard for patients to access their own information in any meaningful or useful way.<\/li>\n<li>Care is less safe and less reliable, patients are prevented from actively managing their care, and clinicians are frustrated.<\/li>\n<\/ul>\n<p>This is a problem. Lots of problems, actually.<\/p>\n<h2>Our\u00a0proposed model, without acronyms<\/h2>\n<p>The model discussed in this video takes a different approach, one that appeals to me for both philosophical and technical reasons.\u00a0In this model:<\/p>\n<ul>\n<li>The basic unit is a <strong>one-patient record<\/strong> unique to the individual patient.\n<ul>\n<li>It is \u2018open source\u2019 meaning that the code is public, maximizing the ability to improve or modify it and create added pieces for new functions.<\/li>\n<li>This basic unit and its information are <strong>owned and controlled by the patient.<\/strong><\/li>\n<li>This is where all the health and medical information about an individual patient is stored.<\/li>\n<li>It contains the most current, complete and up-to-date information.<\/li>\n<li>The patient has full access to their individual record.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>This patient-centered health record has a component that <strong>allows the patient to control access by others,<\/strong> essentially inviting their clinicians (or others) to see and use the information.\n<ul>\n<li>This is not unlike how users of Quicken and Mint.com own their data, and grant access to accountants etc.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>Clinicians can access the system through their own software using one of two mechanisms:\n<ul>\n<li>Using a straightforward process which gives them access to multiple separate patient records, and they work <em>in the actual patient record<\/em>. Or,<\/li>\n<li>Using their proprietary clinician or institution owned system, which is linked to and <em>synchronized with<\/em> the patient\u2019s individual record (through a software interface, described below).<\/li>\n<li>In both cases, <strong>the \u2018official\u2019 version of the information is the patient-centered \/ patient-owned record,<\/strong> fully accessible to the patient.\n<ul>\n<li>This is important because it&#8217;s not uncommon for two different EMRs to disagree about a patient&#8217;s medical facts. In such situations, computer science and quality control\u00a0<em>demand\u00a0<\/em>that there be agreement about which record is considered &#8220;the bible.&#8221;<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>There are <strong>standardized connections<\/strong> between the clinician-based systems and the multiple patient-based records.<\/li>\n<\/ul>\n<h2>With technical details:<\/h2>\n<p>That was English. Now a version of the same information with some jargon:<\/p>\n<ul>\n<li>The patient has a record (EHR) to store his or her health information\n<ul>\n<li>Ideally it is \u2018open source\u2019 software such as NOSH (New Open Source Health Charting System) by Michael Chen. \u00a0Read more about this at\u00a0<a href=\"https:\/\/noshemr.wordpress.com\/\">https:\/\/NoshEMR.wordpress.com\/<\/a>.<\/li>\n<li>It is owned and controlled by the patient.<\/li>\n<li>It is where all the health information about an individual patient is stored.<\/li>\n<li>It functions as the \u2018Source of Truth.\u2019 [&#8220;The bible&#8221; as described above]<\/li>\n<li>The patient has full access.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>The patient-centered record (such as NOSH) has a component that allows the patient to control who can see, change or use the information.\n<ul>\n<li>This is sometimes called UMA (for User Managed Access).<\/li>\n<li>It has other names such as HIE of One (health information exchange of one).<\/li>\n<li>This is what allows the patient to manage who has access.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>Clinicians access the system (the patients&#8217; data) through their own software using one of two mechanisms:\n<ul>\n<li>They use a parallel open-source software system that has a list of the patients using individual patient records they have been authenticated to use. Or&#8230;<\/li>\n<li>They use (work in) their institution\u2019s proprietary system which is linked to and synchronized with the official patient-owned record.<\/li>\n<li>In both cases, the patient\u2019s record is the Source of Truth and fully accessible to the patient.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<ul>\n<li>There are interfaces that make connections work.\n<ul>\n<li><a href=\"http:\/\/thehealthcareblog.com\/blog\/2016\/01\/20\/fhir-the-last-best-chance-to-achieve-interoperability\/\">FHIR (pronounced fire)<\/a> is the one talked about here.<\/li>\n<li>Other \u2018application program interfaces\u2019 (APIs) can be developed or used, especially if the system is open source.<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<h2>Key design principles<\/h2>\n<p>There are several important considerations in a system like this:<\/p>\n<ul>\n<li><strong>Open source software<\/strong> improves security, adaptability, flexibility.<\/li>\n<\/ul>\n<ul>\n<li>This is based on the assumption that <strong>patients should have full control over their health information<\/strong> according to their own needs, not just be given limited access by clinicians or their systems.<\/li>\n<\/ul>\n<ul>\n<li>If patients have full control over access to their\u00a0health information, it goes without saying that <strong>they can access their own\u00a0health information without either delay or barriers.<\/strong><\/li>\n<\/ul>\n<ul>\n<li><strong>It can be adopted incrementally<\/strong> rather than requiring the entire US healthcare system to turn a switch all at once. (Patients can start using it whenever they want, and providers can plug into it whenever they want.)<\/li>\n<\/ul>\n<h2>Our\u00a0call to action:<\/h2>\n<p>Patients and clinicians can help us move from where we are now to a patient-centered health record system by:<\/p>\n<ul>\n<li>Understanding the concept.<\/li>\n<\/ul>\n<ul>\n<li>Being at least somewhat familiar with the terminology.<\/li>\n<\/ul>\n<ul>\n<li>MAKING NOISE about wanting a system like this in their local setting.<\/li>\n<\/ul>\n<p>What do you think?<\/p>\n<p>If you&#8217;re interested, here&#8217;s the 55 minute YouTube replay of the Hangout where we discussed this.<br \/>\n<iframe loading=\"lazy\" src=\"https:\/\/www.youtube.com\/embed\/n83sL0JXhXc\" width=\"600\" height=\"338\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<hr \/>\n<p><em>Members of our Society for Participatory Medicine [<a href=\"http:\/\/participatorymedicine.org\/join-us\" target=\"_blank\">join here<\/a>]\u00a0can participate in discussions on our member listserv. Like many forums, ours is\u00a0sometimes noisy and scattered (ahem, wide-ranging?), but they&#8217;re also home to some great threads. The post above is a message posted Saturday by SPM board member-at-large Peter Elias, a recently-retired primary physician in Maine. It&#8217;s already been <a href=\"http:\/\/thehealthcareblog.com\/blog\/2016\/01\/23\/the-patient-centered-health-record\/\" target=\"_blank\">cross-posted<\/a> by THCB, The Health Care Blog.<\/em><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>The other night I participated in a very useful Google+ hangout with SPM members Adrian Gropper\u00a0and Michael Mascia, and Michael Chen [of NOSH, explained below]. The discussion focused on a [&hellip;]<\/p>\n","protected":false},"author":56,"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":[367,4986,59],"tags":[19,158,3909,150,169,55,118,3592],"coauthors":[],"class_list":["post-18231","post","type-post","status-publish","format-standard","hentry","category-medical-records","category-pm-tech","category-policy-issues","tag-health-information","tag-medical","tag-members","tag-open-source","tag-participatory-medicine","tag-patients","tag-record","tag-spm"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Proposal for a TRULY patient-centered medical record - 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\/2016\/01\/proposal-for-a-truly-patient-centered-medical-record.html\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Proposal for a TRULY patient-centered medical record - SPM Blog\" \/>\n<meta property=\"og:description\" content=\"The other night I participated in a very useful Google+ hangout with SPM members Adrian Gropper\u00a0and Michael Mascia, and Michael Chen [of NOSH, explained below]. 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