The following is a guest blog post by Stacey (@coffeemommy), an empowered patient and breast cancer survivor.
According to my EHR, I had breast cancer. And I had two mastectomies and I’m currently on Tamoxifen. If you read a little deeper, you’ll discover I also had a colonoscopy at age 39. It was clean.
According to my EHR from another institution, I had a colonoscopy at age 37 and two polyps were removed. I also had a series of ideopathic headaches. Beyond my verbally sharing this information with my current care team, they would have no record of these activities.
According to my EHR from yet another institution, I had a miscarriage in 2000 and went on to have two full-term healthy deliveries after that. More headaches and migraine medication. Again, these items are not reflected in detail in my current healthcare record.
And there are more health records of mine spread across the country.
Everything in those respective EHRs is accurate but my “electronic health record” is not really a record at all. My EHRs are snippets of time spanning several states of residency and ultimately dating back to a thick paper folder that, as a child, I remember checking out from the ground floor before appointments at the now defunct Wilford Hall Medical Center.
Beyond my memory of surgeries, inoculations and well visits past, I question whether documentation of my early health history really exists at all at this point.
And therefore, the burden of tying the highlights of my health history together for every new health care provider, falls on my shoulders. A doable task but certainly not an easy task in the typical 15 minute visit window.
Electronic health/medical records lack true interoperability and therefore are not comprehensive for most of the population. Teams of no doubt brilliant people are allegedly working on solutions and voices demanding interoperability and advances in the health IT space are loud.
However, even if my EHR were comprehensive tomorrow in the above context, it would still be incomplete. While every physician who treats me has read/write access to the record I, as the very subject of the record, am unable to add my two cents.
And my two cents would add a lot of context.
As an example, for the past 22 months, I have been on Tamoxifen to keep my estrogen-loving breast cancer from recurring. For 21 of those 22 months, I have had random soft-tissue swelling, random bilateral rashes and a face tingling turned numbness that progressed to such a point I was running to a mirror to see if my left side was drooping. Since there is no documentation of these symptoms as a side effect of Tamoxifen, I’ve been told to take Loratadine for swelling and have had two brain MRIs to rule out a tumor.
What my current team struggles to understand is that historically, I am reactive to many things. Soaps, shampoos, penicillin, sulfa drugs, ciprofloxacin, lanolin and a variety of other substances trigger rashes and soft tissue swelling in my body. So, starting on a new drug and having ‘undocumented’ side effects was not an unusual series of events for me.
When I asked to take a half dose and was told, “We don’t have a protocol for that.”
Again, what is missing from my EHR is the history of my taking half doses of many of the drugs I have been prescribed and having therapeutic results. As a child this was never a problem. For the first 22 years of my life, I was considered a US military dependent and the continuity of care, regardless of what base we were stationed at, was solid. The next twenty years has been a scatter shot of services across zip codes, providers and payors.
A comprehensive (including all of my past) and complete (including my two cents) would save time, money and headaches. Instead of emailing pictures and bringing a written diary of skin rash and swelling, I could simply upload directly to my own record. Instead of emailing a physician with my side effects and saying, “Please add this event to my record” I could add it myself for no cost to the healthcare system treating me. Patterns could be clearly seen and treatment could be modified appropriately if the situation was warranted. Side effects could more accurately be documented and communicated to other patients as trends were noticed.
The idea of patient reported outcomes being included in the EHR seems incomprehensible to some. I’ve heard, “But you can’t trust patient data” and “Patient supplied data is unreliable.” Really? To me it seems that patients themselves are the only ones who could supply this level of data to enrich the health record. And they have the biggest interest in comprehensive care. And, by the way, providers trust my input when I document my health history on the long sheet of paper on an initial visit – why is my information suddenly invalid as a patient?
To be clear, I’m not asking that patients have the ability to edit or rewrite what the healthcare practice has so diligently recorded. I am simply asking that our record reflect more than the set of symptoms we present with at any given visit. Tracking trends real-time will prevent the dreaded question, “How long has this been going on?” The answer will be front and center.
So as the great minds gather to create the interoperable EHR, please consider the patient voice. Interoperability may allow for a comprehensive record but, until my side of the story is reflected, the documentation will remain incomplete.
My body, my data and my health. Please allow me to participate.
Stacey is a strategy and communications consultant inspired to empower patients and caregivers through collaborative education and community building. Runner. Cyclist. Coffee drinker. Organic gardener. Wife to one. Mom to two. Empowered patient and breast cancer survivor almost two years NED. Connect with her on Twitter @coffeemommy