In the 10 years since my father was diagnosed with multiple myeloma, he has accumulated thousands of lab results, hundreds of physician progress notes, and dozens of imaging studies. Because his myeloma has been hard to treat, and perhaps because he is a well-regarded physician in his field, he has accessed the best care available, including fantastic doctors and new therapies available at distant research centers.
Despite the fact that all of his physicians use electronic health records (EHRs), nobody actually has his medical record. It does not exist. Rather, his thousands upon thousands of data points are scattered across the country, with no one health system or physician having unified access to all of it, including my dad.
As a clinical informaticist, I spend a lot of time thinking about interoperability—the extent to which systems are able to exchange data and subsequently present those data such that they can be understood by a user—but nothing prepared me for seeing my dad play the role of his own health data aggregator.
Tracking data over time is a key component of multiple myeloma care. Imaging scans looking for bone lesions and the “light chain” blood tests that measure the myeloma cancer protein are done periodically to assess response to treatments. Each result, depending on its direction, either brings a sigh of relief or a rise in stress and fear along with a shift in treatment regimen. To optimize my dad’s care, his doctors would need to see the full picture: the imaging, labs, and each historical chemotherapy treatment over time.
You can imagine how this ideal interface would look, with a nice, clean graph showing his light chain results, imaging, medications tried (and failed), and the location of his treatment. But no such graph exists. Worse, it cannot exist in our current system because each health system where my father is treated is only responsible for their portion of his overall medical record.
Keep reading full post at Medscape.com (warning: requires Medscape account)