e-Patients
Patient-centered healthcare – so where is the patient?
Sometimes you almost feel sorry for those in the medical industry trying hard to make healthcare more patient-centric. Pauline Chen M.D. writes in her latest blog post about the adoption of “Patient Medical Homes”. Designed to help patients see a full suite of caregivers under a single roof, they turn out to have often made patients feel dissatisfied and unsure.
Once again it turns out that patient perspectives were largely ignored and the Patient Medical Homes were designed by medical experts, with the ironic results of unhappy patients! What should be a great initiative misses the boat without patient involvement and feedback. Pauline writes “In working so hard to adopt changes on their patients’ behalf, clinicians had temporarily lost their focus on the patients themselves.”
Gosh, sounds a lot like the design of Electronic Health Records doesn’t it? One of the big surprises for me as I embarked on a study of healthcare delivery to help build Lifetime Health Diary™ was the apparent disinterest, even outright dismissive attitude that so many clinicians have in accepting “patient inputs” to Electronic Health Records. After all, in their view that would be “unreliable data”.
Perhaps it would be unreliable at a clinical level, but that doesn’t mean patient inputs should not be collected and taken note of. So many physicians have told me that “clinicians think in stories”. Even surgeons in the emergency-filled requirements of an ICU. It begs the question, “whose story?”. How can that story possibly be represented in a 15 minute consultation, or read off the chart of a patient in a hospital bed? It can’t and it never will be. Evidence Based Medicine may help define best practice clinical pathways, but it does nothing to make me the patient feel that my own story is being understood or even cared about.
In fact, what would happen if a significant amount of patient inputs were found to be reliable? Perhaps in some situations even more reliable than clinical data? Certainly at least for chronic illnesses it seems obvious that gains in patient engagement in terms of monitoring their lifestyle would likely outweigh any consideration of “non-clinical” patient inputs being collected and noticed in the first place.
So we shouldn’t really feel too sorry for most clinicians making the effort to be more patient-centric, because until that actually includes genuine patient inputs in the form of structured data (not just side notes) “patient-centric” is all too often just medical code for “clinician-centric opinion about the patient”.
In health,
Hamish MacDonald
I have no access to my own health info…
I would like to share a short story with you. Yesterday I went to my doctor to get a referral for X-Ray and thyroid ultrasound. (Keep in mind I do not visit a doctor on a regular basis. Hence, I am not aware of how this process doctor-referral-radiology center-results works. I am more of a patient who looks for relevant information online, avoids MRI/X-Ray, etc. unless the momentum arrives (like yesterday) and prefers keep a track of my own records.) Therefore, can you imagine my frustration when after getting all these procedures done I was refused to be given the results?
I was told my doctor (not me!) will receive the results in 4 days! Also, I was told they are not allowed to disclose information about my health to me. So, what if I have some serious injures (which I am not aware of) and it may have devastating consequences on my health if I do not address the problem now? But I cannot – I have to wait 4 days…
Moreover, apparently, when the doctor gives you a referral to the radiology center, they have no clue why the procedure should be done. Doctor and radiology center have no communication at all. A gap. Big gap.
Luckily, I knew exactly the reason of having X-Ray and ultrasound. But what if I had an amnesia, or speech disorder, or something else preventing me from explaining to the nurse why I am getting this done, and my doctor was not in the town in that moment to give them information, what would have happened? Who would have known why am I doing this?
So now, besides having paper medical records at my doctor’s office, I have new paper records started on me in the radiology center (of course, I have many other records at different health organizations collected for last 20 years, I just do not know where are they). And I have no access to either one. Everything is disconnected. And I do not know how serious my situation is. At least for next 3 days.
