Tag Archives: Veterans

Open Notes research: VA patients find their clinical notes helpful and don’t bother doctors much.

A new research study on OpenNotes, one I’ve had the joy to be part of, has been published in the Journal of the American Medical Informatics Association (JAMIA). VA OpenNotes: exploring the experiences of early patient adopters with access to clinical notes, by colleagues Kim Nazi, Carolyn Turvey, Dawn Klein and Tim Hogan, describes views of users of the VA’s personal health record MyHealtheVet. feat_bluebutton

MyHealtheVet has offered patient access to their electronic health record through Blue Button since 2010. In January 2013, that access exploded to include clinical notes. All the notes. Primary care, specialty medicine, mental health. Patients could also see reports of tests – from Xrays to CT scans to lab results. These can be seen 3 days after completion (except Pathology has a 14 day hold).

How are patients using access to clinical notes? What do they find? Do they contact their doctor? This study presents findings from the first 9 months patients could access clinical notes. Users find reading doctors’ and nurses’ of benefit, help explain things and reinforce discussions from visits. Most use the information on their own, with few contacting their doctor.

3 out of 4 patients did not contact their provider after reading notes, because they had no reason to. Patients planning to contact their provider wanted to learn more about a health issue, medication, or test result, or get an explanation about something in the note.

Read the full paper, PDF here, for detailed results from more than 28,000 who responded to the survey on the MyHealtheVet website June – September 2013. Here’s a few of the most interesting findings:

Among 6,810 who said they accessed VA Notes, approximately:
– 72% are age 60 or older
– 73% read the notes, 26% downloaded a copy and 11% shared notes with others
– Just under 6% discussed the notes with a VA provider or care team member
– 75% had no plans to talk to the provider
– 82% who didn’t plan to talk to provider said they had no reason to do so
– Of those who planned or did talk to provider, 87% do so to learn more

The study results offer more glimpses into this new world of OpenNotes. While some patients clearly feel that talking to their doctor about the notes ‘bothers them’, a few feel that provider discussion is needed to ‘correct’ the notes. I believe full transparency is absoutely the right thing to do, yet does require new kinds of thinking and acting. Notes have to be written with the patient and family in mind. Yet we need to go beyond the idea of acceptance, toward fully embracing such a shared contribution. OpenNotes are a great Shared Health Data journey – one I’m sure we’ll look back on and chuckle, wondering what all the fuss was about. Let’s get there now.

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!

Experiences with open notes are meaningful and profound, Part I. And started this blog.

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.