TAKE MY DAMN DATA, PLEASE.

By Jessie Gruman

April 2, 2014

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)?

The government’s investment of billions of dollars into implementing EHRs has not produced much progress on this front. While recent studies report  reasonably high rates of implementation of EHRs in primary care practices, “The health information technology (IT) systems that are currently available are not designed to talk to one another,” state the authors of a recent paper published in Health Affairs on the unfulfilled promise of health IT. This means that the information in my EHR cannot be read by clinicians working in hospitals, clinics and practices that use a different information system.

The fact that I – a patient – am frequently the sole arbiter of which of my doctors receives what information is not a good idea. Here’s why:

• I don’t know which of my many doctors should have a record of which test results, so I guess.
• Sometimes I forget to do this or lack the imagination to anticipate their interest or need.
• At times I am too ill or distracted or busy with my own work to attend to doing these chores in a timely way.

The default responsibility of patients for coordinating our health information means that our clinicians often make decisions about our care on the basis of incomplete information.

The lack of an interoperable EHR also means that tests are needlessly repeated. I’ve gotten the same lab tests in three settings within a month because I couldn’t get the results from the first sent in time for the two other appointments. One doctor made a treatment recommendation based test results viewed on my patient portal on my iPhone, but he still insisted on having the test redone in the clinic’s lab so that he had a “legal” record in the chart. The price tag quickly mounts. Particularly when I’m feeling ill, my recollection of what test I’ve had gets cloudy. Why take a chance? I’ll just have the test repeated here today in this hospital system.

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. But I am – as millions of others are – a patient NOW. The current lag in information technology undermines the quality of our care, costs us and the system money, and requires a considerable investment of our time.

What can be done to compensate for the lack of progress in implementing interoperable EHRs?

1. Clinics, practices and hospitals should provide a written statement to us at each visit about the transmission of test results and other information from our records to other clinicians. The statement doesn’t have to be long or complicated, but it should be enough to remind us that this may not happen unless we take some action.
2. Clinics, practices and hospitals should have easy-to-follow procedures for patients and families to request the secure transmission of information to other clinicians. And there should be no fax requirement. Really.
3. Diagnostic and testing sites should clearly communicate their policies about what they will do, what information they need, how long it will take and how much it will cost (as it often does, in the case of sending CDs of scans).
4. And, in an ideal world, our clinicians would help those of us with multiple chronic conditions think through which of our other clinicians should receive the results when ordering tests or when a new diagnosis is made or a new procedure is scheduled.

Patient activists are working hard to make sure that we have access to our medical records, including notes. I truly appreciate their efforts to ensure that EHRs become useful tools that support our abilities to care for ourselves and those we love. This work is visionary.

But me? I’m working with what is, trying to coordinate my information and care. Right now, I just want my clinicians and the clinics, hospitals and practices they work in to tell me whether they are going to do this for me. And then I want them to either do it or make it easier for me to do it myself.

Some patients today are demanding: “Give us our damn data!”

I’m a patient, and I am just as adamantly demanding: “Take my damn data and coordinate it for me. This is not my job and I’m not good at it.”

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.