{"id":580,"date":"2019-02-05T13:25:13","date_gmt":"2019-02-05T18:25:13","guid":{"rendered":"https:\/\/dwan.org\/?p=580"},"modified":"2019-10-25T11:36:26","modified_gmt":"2019-10-25T15:36:26","slug":"fixing-the-electronic-medical-mess","status":"publish","type":"post","link":"https:\/\/dwan.org\/index.php\/2019\/02\/05\/fixing-the-electronic-medical-mess\/","title":{"rendered":"Fixing the Electronic Medical Mess"},"content":{"rendered":"\n

In my previous blog post,<\/a> I talked about the fact that medical records are a dumpster fire from a scientific data perspective. Apparently this resonated for people.<\/p>\n\n\n\n

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This post begins to sketch some ideas for how we might start to correct the problem at its root.<\/p>\n\n\n\n

Lots of people have thought deeply about this stuff. One specific example is the Apperta Foundation<\/a> whose white paper makes a wonderful introduction to the topic. <\/p>\n\n\n\n

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@bentoth\u2019s second point, above, is exactly correct. Until we put the patient at the center of the medical records system, we\u2019re going to be digging in the trash. <\/p>\n\n\n\n

The question is how we get from here to there.<\/p>\n\n\n\n

Not Starting From Zero<\/h2>\n\n\n\n

Before digging in, I want to address a very valid objection to my complaint: <\/p>\n\n\n\n

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It\u2019s true: Even given the current abysmal state of things, researchers are<\/em><\/strong> still making important discoveries. This indicates to me that it will be well worth our while to put some time and effort into improving things at the source. If we can get value out of what we\u2019ve got now, imagine the benefits to cleaning it up!<\/p>\n\n\n\n

Who Speaks for the Data?<\/h2>\n\n\n\n

One of the first steps towards better data, in any organization, is to identify the human beings whose job is, like the Lorax,<\/a> \u201cspeak for the data.\u201d Identifying, hiring, and radically empowering these folks is a recommendation that I make to many of my clients.<\/p>\n\n\n\n

Just \u2026 please \u2026 don\u2019t call them a \u201cdata janitor.\u201d <\/p>\n\n\n\n

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If you tell me that you have \u201cdata janitors,\u201d I know that you consider your data to be trash. Beyond that, I also know that you consider curation, normalization, and data integration to be low-respect work that happens after hours and is not part of the core business mission. It\u2019s not a big jump from there to realize that the structures and incentives feeding the problem aren\u2019t going to change. Instead, you\u2019re just going to hire people to pick through the trash and stack up whatever recyclables they can find.<\/p>\n\n\n\n

I\u2019ve even heard people talk about hiring a \u201cdata monkey.\u201d Really, seriously, just don\u2019t do that, even in casual conversation. It\u2019s not cool.<\/p>\n\n\n\n

Who does the work?<\/h2>\n\n\n\n

It takes a huge amount of work to capture primary observations, and still more effort to connect them to the critical context<\/strong><\/em> in which they were created. Good metadata<\/strong><\/em> is what allows future users to slice, dice, and confidently use datasets that they did not personally create.<\/p>\n\n\n\n

Then there is the sustained work of keeping data sets coherent. Institutional knowledge and assumptions change and practices drift over time. Even though files themselves may not be corrupted, data always seems to rot unless someone is tending it. <\/p>\n\n\n\n

This work cannot simply be layered on as yet another task for the care team. Physicians and nurses are already overwhelmed and overworked. Adding another layer of responsibility and paperwork to their already insane schedules will not work.<\/p>\n\n\n\n

We need to find a resource that already exists, that scales naturally with the problem, and who also has a strong self-interest in getting things right.<\/p>\n\n\n\n

Fortunately, such a resource exists: We need to leverage patients and their families<\/strong><\/em>. We need to empower them to curate and annotate their own medical records, and we need to do it in a scalable and transparent way.<\/p>\n\n\n\n

I\u2019m willing to bet that if we start there, we\u2019ll wind up with a population who are more than happy, for the most part, to share slices of their data because of the prospective benefits to people other than themselves.<\/p>\n\n\n\n

The tools already exist<\/h2>\n\n\n\n

Health systems don\u2019t encourage it, but patients can and do demand access to the data derived from their own bodies. People suffering from rare or undiagnosed diseases make heavy use of this fact. They self-organize, using services like Patients Like Me<\/a> or Seqster<\/a> to carry their own information back and forth between the data silos built by their various providers and caregivers. Similarly, physicians can work with services like the Matchmaker Exchange<\/a> to find clues in the work of colleagues around the world.<\/p>\n\n\n\n

Unfortunately, there is no easy way for this cleaned and organized version of the data to get back into the EMR from which it came. That\u2019s the link to be closed here \u2013 people are already enthusiastically doing the work of cleaning this data. They are doing it on their own time and at their own expense because the self-interest is so clear.<\/p>\n\n\n\n

The job of the Data Lorax is to find a way to close that loop and bring cleaned data back into the EMR. This is different<\/strong><\/em> from what we do today, so we\u2019re going to need to adapt a lot of systems and processes, and even a law or a rule here or there. <\/p>\n\n\n\n

Fortunately, it\u2019s in everybody\u2019s interest to make the change.<\/p>\n","protected":false},"excerpt":{"rendered":"

In my previous blog post, I talked about the fact that medical records are a dumpster fire from a scientific data perspective. Apparently this resonated for people. This post begins to sketch some ideas for how we might start to correct the problem at its…<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[37],"tags":[],"class_list":["post-580","post","type-post","status-publish","format-standard","hentry","category-genomics"],"_links":{"self":[{"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/posts\/580","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/comments?post=580"}],"version-history":[{"count":7,"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/posts\/580\/revisions"}],"predecessor-version":[{"id":594,"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/posts\/580\/revisions\/594"}],"wp:attachment":[{"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/media?parent=580"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/categories?post=580"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dwan.org\/index.php\/wp-json\/wp\/v2\/tags?post=580"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}