{"id":6923,"date":"2010-08-08T09:55:13","date_gmt":"2010-08-08T14:55:13","guid":{"rendered":"http:\/\/pmedicine.org\/epatients\/?p=6923"},"modified":"2010-08-08T09:55:52","modified_gmt":"2010-08-08T14:55:52","slug":"reflections-after-a-specialist-visit-without-opennotes","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2010\/08\/reflections-after-a-specialist-visit-without-opennotes.html","title":{"rendered":"Reflections after a specialist visit *without* OpenNotes"},"content":{"rendered":"<p><em><a href=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2010\/07\/OpenNotes.png\" data-rel=\"lightbox-image-0\" data-rl_title=\"\" data-rl_caption=\"\"><img loading=\"lazy\" decoding=\"async\" class=\"alignleft size-full wp-image-6680\" title=\"\" src=\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2010\/07\/OpenNotes.png\" alt=\"\" width=\"211\" height=\"97\" \/><\/a>Next in our <a href=\"https:\/\/participatorymedicine.org\/epatients\/index.php?s=opennotes\">series<\/a> on my experience with OpenNotes, a project sponsored by the Robert Wood Johnson Foundation&#8217;s Pioneer Portfolio.<\/em><\/p>\n<p>This item has nothing to do with OpenNotes itself &#8211; it&#8217;s what I&#8217;m seeing now that I&#8217;ve <em>started <\/em>accessing my doctor&#8217;s notes. In short, I see the clinical impact of <em>not <\/em>viewing my record as a shared working document.<\/p>\n<p>Here&#8217;s the story.\u00a0<!--more--><br \/>\n______<\/p>\n<p>In OpenNotes, patient participants can see the visit notes their primary physicians entered. Note &#8211; primary, not specialists. I imagine they needed to keep the study design simple.<\/p>\n<p>So, here I am in the study, going through life. Five weeks ago I wrote <a href=\"https:\/\/participatorymedicine.org\/epatients\/archives\/2010\/06\/hm-because-of-viewing-my-visit-notes-i-did-something-better.html\">my first realization<\/a>: after the visit I&#8217;d forgotten something, so I logged in. There it was:<\/p>\n<blockquote><p>IMPRESSION AND PLAN: &#8230;<\/p>\n<p>3.  Dermatologic.  I think this is actinic keratosis and needs to be removed.  Refer to dermatology.<\/p><\/blockquote>\n<p>I&#8217;d reported a crusty lesion on my forehead at the hairline. I&#8217;d had the same kind of lesion last year, and the dermatologist had frozen it off. (I have a history of skin cancer.) This time, the need to handle it had slipped my\u00a0(ever slippery) mind.<\/p>\n<p>Several weeks had already gone by so I emailed Dr. Sands (in the PatientSite secure portal) asking if I should insist on a fast appointment. He said no.<\/p>\n<p>Notice that all this happened <em>without any phone calls<\/em>, because I could do it online. And that means it all happened sooner (act in the moment, no phone tag). And it captured the action in the moment when I thought of it.<\/p>\n<p style=\"padding-left: 30px;\"><em>[These are all well known advantages of being online &#8211; in other industries, but still debated in healthcare, sigh. How can an industry founded in science ignore evidence from other industries?]<\/em><\/p>\n<p>Last Wednesday I saw the specialist. On my way out I found myself expecting that I&#8217;d go home and update the notes in PatientSite. Then I realized I can&#8217;t &#8211; because at present the visit notes are read-only.<\/p>\n<p>More to the point, today the visit notes are an unstructured blob of text. I realized:<\/p>\n<ul>\n<li>In my record we should have an <strong>open issue,<\/strong> under  dermatology  (or &#8220;skin,&#8221; for users who want simple vocabulary): &#8220;Have dermatologist check out   actinic keratosis.&#8221;<\/li>\n<li>This would essentially be just like a customer service <strong>issue-tracking system<\/strong>, or a software  developer&#8217;s  bug-tracking system, with data like this:\n<ul>\n<li>Reported by: Sands, D.Z.<\/li>\n<li>Severity: unknown<\/li>\n<li>Follow-up plan: see derm<\/li>\n<li>Status (open)<\/li>\n<\/ul>\n<\/li>\n<li>On that  item, the specialist (or I) would add\n<ul>\n<li>Seen by  Dr. Digby, Chestnut  Hill, 8\/4. Lesion is gone.<\/li>\n<li>Status:  resolved.<\/li>\n<\/ul>\n<\/li>\n<li>As with customer service systems, I could filter my view various ways: Open Issues, Dermatology History, date ranges, etc.\n<ul>\n<li>All the software to do this has existed for many years, folks.<\/li>\n<\/ul>\n<\/li>\n<li>If this doesn&#8217;t seem important for you yourself, think about it as empowering you to take care of your child, or an aging parent. All we&#8217;re asking is that we let our doctors <em>help us help ourselves<\/em>. With fewer phone calls.<\/li>\n<\/ul>\n<p>Note: there are two big deals here &#8211;<\/p>\n<ul>\n<li><strong>My ability to add notes, <\/strong>even if another doc isn&#8217;t in the system.\n<ul>\n<li>I&#8217;m still constantly annoyed that doctors at my hospital aren&#8217;t required to be on PatientSite, because they&#8217;re not employees, they&#8217;re independent businesses, and that business relationship trumps better care. In essence although it <em>looks <\/em>like an office of my hospital, it&#8217;s really just a &#8220;doctor mall&#8221; with shared office services.<\/li>\n<li>So I can&#8217;t secure-email them and I can&#8217;t make appointments online &#8211; that still requires phone calls when the office is open. Ugh. And sometimes it requires dealing with an impatient clerk. Double-ugh.<\/li>\n<\/ul>\n<\/li>\n<li><strong>Issue tracking. <\/strong>At present the visit notes might just as well be a Word file: one big blob of text.\n<ul>\n<li>No, actually, a Word file can include indexing, headlines, pictures, boldface for emphasis, table of contents&#8230; today&#8217;s system is more primitive. (How do doctors function with tools like this??)<\/li>\n<li>So today it&#8217;s just like a plain text file (Notepad or TextEdit).<\/li>\n<\/ul>\n<\/li>\n<\/ul>\n<p>In short, the medical record should become <strong>a joint working  document<\/strong> among <strong>my providers <\/strong>(all of them) and <strong>me <\/strong>(a collective noun, including  my circle of supporters).<\/p>\n<p>______<\/p>\n<p>I welcome comments from people (patients, providers, vendors) whose systems do have these features. Vendors, just keep it factual, non-commercial, please &#8211; link to fact sheets or demos on your website.<\/p>\n<p>(If this sounds like patients climbing into the driver&#8217;s seat, well yeah.)<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Next in our series on my experience with OpenNotes, a project sponsored by the Robert Wood Johnson Foundation&#8217;s Pioneer Portfolio. 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