My cardiologist recommended I get a stress echocardiogram so he could rule out the cause of some new symptoms. After I had scheduled the test, I realized that some of my other doctors should have a record of this test. But whose scope of concern would include these troubling symptoms? Probably at least three of them: my primary care physician, my survivorship physician and my oncologist. And, hmmm, maybe my pulmonologist? When I showed up for the test, I asked if these doctors could receive a copy of the result. “No, we send results only to the referring physician. Talk to him about sending them to others,” the receptionist told me.
After the test, I called my cardiologist’s administrator. “Sure I’ll send them but I can’t take that information over the phone. Please fax it to this number. Make sure you include name, address, affiliation, phone, fax and email.”
Fax! How quaint. I asked if I could email this information, having dumped my fax machine in 2009 and not being able to locate the fax function on my laptop.
“No. We don’t take email from patients.”
Ah. So I made a list of all this information and put it in the mail.
I wish I could tell you that this little tangle was a one-time glitch in otherwise smooth care coordination by my clinicians. But it’s not. For me and for millions of others with chronic conditions who are treated by multiple doctors in different settings, this is normal. Or it would be if a) more of us knew that the results of our tests and other important information about us was not routinely available to all our relevant clinicians, and b) we realized what was at stake.
At least I’m aware that if I don’t coordinate my information, it’s not going happen, and I’m resigned to unraveling the different rules for transmission of each practice and hospital and testing site. But many people just assume that test results will be automatically and magically sent to the right doctors and don’t bother to request that it be done. Most of us don’t track the fast-changing relationships among entities within health care. Indeed, how would we know whether or how our cardiologist is connected to our primary care provider or to a specific hospital, especially since this may have changed since our last visit and may or may not involve a shared electronic health record (EHR)?
Continue reading... 
I know that tremendous effort and resources are directed toward solving the problem of organizing and coordinating patients’ health information, and I don’t doubt that within four or five years, this problem will fade.