This IS empowerment. Patients reading their entire electronic record, Part II.

JMIR 2Today I had the privilege and pleasure to add to the scientific literature about patients accessing their electronic record including clinical notes.

Patient Experiences With Full Electronic Access to Health Records and Clinical Notes Through the My HealtheVet Personal Health Record Pilot: Qualitative Study, co-authored with colleagues Erin Schwartz, Anais Tuepker, Nancy Press, Kim Nazi, Carolyn Turvey and Paul Nichol, was published in the Journal of Medical Internet Research. Anyone can get it, since JMIR is open access. A PDF can be found on my Portfolio page.

What we did: Talk to VA patients who used the My HealtheVet Pilot, the VA’s first personal health record. It let users see most of their EHR – notes, summaries, procedure notes, imaging reports, lab test results. Copies of the data could be viewed or downloaded. It ran from 2000 to 2010. Most who enrolled were patients at the Portland VA. We wanted to hear from people who looked at their records, so we invited a random sample to attend focus groups. We had 5 groups.

What we found: Four themes. First, patients said it was a great tool to supplement usual communication. Second, it improved self-care. Like helping to better understand their conditions or remember what was recommended. Third – and this is most important – they said they became more engaged in their care. We heard great stories of participatory care, where people felt empowered to ask providers questions, or request things happen. Or not happen. And of course there was one PHR user who wanted another doctor after viewing his notes (you say disruption, I say empowerment 🙂 ). Fourth, we heard their views about notes and the electronic record. Much of it we heard before. Judgmental language…repeated content..boilerplate notes.

Some of my favorite e-patient quotes:

My Oncologist was a pretty up-front guy. But I got on HealtheVet I found out he wasn’t as up front as I thought he was…with his comments, what he had written. So, when I went to see him the next time, I said, “I’d like to know, what you think and what you know, and what you’re predicting. So, rather than just write it in there, tell me and then write it.

It just probably made me healthier than I might have been without having the information available, to either talk to the doctor, you know, just something as simple as changing a medication for something. You know, going, “Hey, look, the thing you got me on ain’t really working that great. Let’s try something different. What do you think about this?

Well, sometimes I can figure out a problem myself either by my own online research or by just thinking about it and saying, “Well, I’m going to try this and fix it without the doctors involved.

Here’s a table summary of the findings:

JMIR table

In my Part I post yesterday about this study, I shared my personal journey on sharing notes with patients. This study affected me – tipping me to start this blog!

Our results support prior research, including papers by the OpenNotes researchers, Brian Fisher in the UK, and Earnest, Ross et al.

Usually, it takes years for research to translate into practice. I’m happy to say that practice has happened already. As of mid-January of this year, VA patients have access to their full electronic record, including notes and test results through the Blue Button. For Veterans who are VA patients….GIMME MY DAMN DATA doesn’t apply. Our research can’t stop here, but it’s a whole new sandbox!