Tag Archives: download

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.

Blue Button Download: The Surface of a Deep Blue Sea

I knew today was the day that the Veterans Health Administration introduced the Blue Button on its PHR, MyHealtheVet. A rapidly developed prototype by VA and CMS, it gives authenticated PHR users the ability to download their personal health information. The idea is so simple. Just click on the blue button.

I have access to a MyHealtheVet “test patient” at the Portland VA, so I logged on as this fictional patient, and voila, there it was.

It was easy to do, and what I saw was a file that included some self-entered data and some electronic record data – medications, clinical reminders, the test patient contact information. I saved it to my desktop.

The Markle Foundation has been spearheading greater functionality allowing consumers access to their own health record information. Here’s a link to their new Policies in Practice paper, The Download Capability. There’s an excellent discussion about making sure users are notified about risks of downloading their data, yet balancing promoting and educating about this function while not scaring people away. In going through the motions as a test patient, I think we need to put our collective minds together on this one. I’ve posted before that people who don’t use patient portals and PHRs may tell us more about what we’re trying to do than those who do use these tools.

One interesting thing I found today. I was looking for stories about the new download capacity, so I searched “Blue Button”. Did you know Blue Buttons are actually jellyfish (sort of)? Amazingly beautiful creatures. Apparently they live on the surface of the deep blue sea. This is a lovely metaphor. The PHR Blue Button might be the perfect beginning to what lay ahead – or below, in this case – a lot more personal health information at patients’ fingertips.

Prediction with Open Medical Notes: A Grand Slam for Patients

OK, I’ll admit it. I’m a Red Sox fan. I was born at Beth Israel Hospital, grew up near the Orange Line. So I’m not in bad company when rookie Dan Nava hits a grand slam on his first at-bat (and first pitch!). But that’s not the only great story in the Boston Globe lately.

The Open Notes project I talked about here and e-patients.net posts of here, is a Robert Wood Johnson Foundation project studying patient access to medical records and providers’ notes.

I’ve been studying this subject, interviewing patients who have been able to download a lot of their electronic record from the Veterans Health Administration (the first “version” of MyHealtheVet, VA’s personal health record). I haven’t completed all the focus groups yet, but so far the discussions have been exciting and illuminating. Open Notes is a much larger study, so my contribution is likely to pale in comparison. Nevertheless, I’ll throw some predictions out there on this field of study:

1. Once patients see the real thing, they really like having access.
2. They expect medical jargon but it doesn’t get in their way: they just Google the words and abbreviations.
3. Some content surprises – at first – but then people deal with it.
4. Many say content is wrong. They want it corrected.
5. Many feel it helps them “manage” (our word, not theirs) their medical problems better.
6. It’s uncommon for a person to be distraught.
7. Many feel more prepared for in-person visits.

In other words, shared health records/data is a Grand Slam!

While the fans might be wild and happy, the players (doctors and other record ‘writers’) won’t all be happy about it. It will be a GAME CHANGER. How do you think our notes will change?