My post titled “Patient Controlled Records Could Work Internationally” has driven a lot of interesting conversation in both the comments and my email inbox. I want to highlight some of the responses in a few future posts. The responses do a really good job extending the conversation around a patient controlled health record.
One example of this is from regular reader and commenter R Troy (Ron). As I mention in my post, I think that the patient controlled medical record can work for chronic patients, because they care about their care. R Troy’s comment does a good job explaining a couple examples of why chronic patients can really benefit from having and controlling their patient record:
I am sure that you are quite correct; people in good health have far less interest in maintaining their own health records, except perhaps for those who are fanatics who want to track everything.
As you may have guessed, I have chronic problems – in my case asthma and allergies primarily. And one family member is T1D, and another has a serious auto immune disorder. The latter in particular is part of my passion for EHR’s – I believe that treatment would be far better handled and the results understood with EHR’s with analytical capabilities. Same reason I want a good PHR capability – because that illness plus my issues demand having good data when an emergency occurs, or you move to a new doctor.
A few years ago, the family member with the immune disorder had been scheduled for outpatient treatment at Hospital X. The night before, that person needed to get to an ER ASAP. We wanted the ambulance to go to the ER at X. But there was a bad winter storm, and the ambulance took the person to Hospital Y, in a separate hospital system.
It took Y a few days to get sufficient paper records faxed over from X and from the treating doctor to properly care for the patient, making the situation even worse, and very wasteful cost wise. While HIE would greatly have helped, so would a viable PHR that was well populated and very readily and quickly accessible at Y. BTW, I’m not sure if X and Y are yet able to communicate (the doctor is still not live on an EHR), but I am quite sure that the EHR used in the ER at X (which the patient uses from time to time) has only minimal connections to the EHR used by the rest of hospital X.
One of my HealthIT instructors had orthopedic work done at hospital Z, with lots of imaging. A short time later, he found himself in the ER of hospital X – which could not access any of the imaging from Z, which now had to be completely repeated. Both wasteful and dangerous.
If HIE’s were ‘universal’, at least in the US, the need for a PHR would mainly revolve around the patient’s need to see all their info in one container, plus to get at it from outside the US if the need came up. But it would still exist.
We won’t go into all the challenges of the universal HIE here, but until those challenges are solved. You can see the value of a chronic patient having their universal health record that they can share no matter where they go for healthcare.