This post is about Experiences. My experience. Patients’ experiences. And the birth of this blog. It’s the story about my own awakening about full transparency and sharing notes with patients. It’s also a post about an important research study I hope helps Give Patients Their Damn Data.

Patient access to their entire health record, now referred to as OpenNotes (huge nod to Tom Delbanco, Jan Walker and RWJF for driving such disruption!), isn’t common but needs to be. A few months ago, the VA opened up access to clinical notes and all test results through the Blue Button. Now there’s more evidence this needs to happen everywhere.

A few years back, I joined the Veterans Health Administration because they – like Kaiser and Group Health – were leading the way with personal health records (PHRs). As the VA ramped up their PHR, My HealtheVet, they were also winding down piloting of their 1st PHR prototype. Tested at 9 VA facilities, over 7,000 VA patients had access to most info in their chart: notes, discharge summaries, all test and imaging reports – pretty much the whole enchilada.

My boss and mentor, Paul Nichol, an internist at the Seattle VA and VHA Director of Medical Informatics, said, “We should study what patients think about reading clinical notes and seeing their full record.” also mentioning, “We have to take this national. All patients need this.” I’m a researcher and don’t shy away from evaluation. Yet my first reaction was, Why? I don’t have a problem with patients seeing test results, but I really don’t want to share notes that I write…

So I went to the literature to see what’s already known. There were some studies – not a lot – but enough to support the idea that opening notes had great value to patients and families. And plenty of evidence about push-back from doctors and clinicians. Guess I wasn’t alone.

The My HealtheVet Pilot was going off-line soon, and there wasn’t time to write a grant and get funding for a big study. So I solicited help from Nancy Press, an anthropologist at Oregon Health Science University, and recruited Portland VA patients who downloaded their records using the Pilot PHR. We developed questions for focus groups, such as ‘What did you look at? How did it help you? Were you confused? Harmed? How did that affect your clinic visits and relationship with your providers?’ We got great feedback from James Ralston, a well-known eHealth researcher at Group Health. I was lucky to have 2 qualitative researchers, Erin Schwartz and Anais Tuepker, join us to analyze the transcripts.

Here’s what the 1st focus group participants said: It was great to see notes. It was a communication tool. It helped remember things. It gave more insight into health issues. Some information in notes was surprising at first, but it was better to have it all, then to have part of it or none of it. Some of it was confusing, but they just Googled it. Some talked to their provider about notes, most didn’t. When asked (many times) if they experienced harm seeing their record, the answer was the same. NO.

After 1 focus group, my views became unsteady. After 2, they changed. After 5, they were upside down.

I was so moved by what I heard about patient and family caregiver experiences, I decided to start a blog. Not just about Open Notes, but about shared information, shared communication, shared decision-making and participatory care. Shared Health Data was born.

The research paper on VA patient experiences with full access to health record data and clinical notes comes out this week just came out in the Journal of Medical Internet Research. I’ll summarize our findings in Part II.