Tag Archives: meaningful use

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.

Million Veteran March Toward Participatory Medicine – VA OpenNotes

This past weekend, the Veterans Health Administration kept their promise of shared health data — substantially expanding health record information available to patients through the VA Blue Button in the personal health record. About 1 million patients can get their whole record via VA Blue Button.

Now, My HealtheVet PHR users can get all test results, from labs to radiology to pathology. Pathology! They can download and print providers’ clinical notes. Notes! It’s not real time, but it’s Real Big. Notes and results can be seen after 7 days. Pathology at 14 days.

VA Blue Button

As a clinical champion of this effort, I field questions and concerns. Angst is from mental health providers, with concerns about patients seeing their written assessments. Some believe it may negatively affect clinician-patient therapeutic relationships. I try to point out that (a) patients already have legal access to these notes, (b) VA opened records to >7000 patients for 10 years and not much happened (except people got empowered), and (c) research shows more benefit than expected.

We don’t have all the answers, and still have a lot to learn about this. But now there’s one very large place to learn from…

What do you think? How will patients and clinicians benefit? Will there be downsides? What about health systems, what will change? Let me know.

Additional comments posted on Society for Participatory Medicine blog.

Note: this post does not represent any organization or agency

When it comes to patient access to clinic notes — doctors worry, but patients don’t.

It’s a Blue Ribbon Day for sharing health data with patients.

Annals of Internal Medicine role modeled open access today, offering full access to several papers about giving patients access to clinic notes. One paper is from Open Notes, a study giving patient access to doctors’ notes at 3 different health systems. I’m a huge fan, and commented many times about this game-changing effort.

A second paper by V.A. colleagues Donna Zullman, Kim Nazi and Carolyn Turvey and Todd Wagner, describes high interest of My HealtheVet users in sharing their PHR data with family and other providers. More on this in my next post.

The Open Notes paper, Inviting Patients to Read Their Doctors’ Notes: Patients and Doctors Look Ahead, by Jan Walker, Suzanne Leveille, Long Ngo, Elisabeth Vodicka, Jonathan Darer, Shireesha Dhanireddy, Joann Elmore, Henry Feldman, Marc Lichtenfeld, Natalia Oster, James Ralston, Stephen Ross, and Tom Delbanco, tells the “before” story — physician and patient perception of open access to doctors’ notes. While we anxiously await the “during & after” story, champions of open notes will take some time to ponder the survey results in the paper.

As expected, there were big differences in views between physicians who participated and those who declined. The docs who didn’t join Open Notes (i.e., didn’t want patients to read their notes) were less likely to feel that access would help patients be more prepared, improve self-care or medication adherence. These non-adopters reported that access would cause patient worry and confusion.

In addition, physicians in all groups (less so among participants) believed open access would increase length of visits, lead to more communication between visits, and result in changes in documentation. A particularly intriguing result is that:

Among physicians participating, 33% at Beth Israel and 40% at Harborview felt that patients would be offended by reading their notes.

and there were some conflicting findings as well:

Over 70% of participating physicians at all 3 study sites believed patient satisfaction would improve

Yet

Over 75% of participating physicians felt that risks for lawsuits would not change

What did patients think? They overwhelmingly believed open access would be beneficial.

What does this all mean? It may speak more about medical record documentation beliefs than about sharing sharing notes. After all, until we fundamentally change how our records are generated (getting to a true shared record), it will be hard to move the needle on what some people think. Keep in mind, this study is about what people think, not about how people behave with open notes. For several years, the V.A. opened the record to thousands of patients, in the first version of My HealtheVet. Veterans saw notes, imaging studies, even operating room reports. No unintended consequences resulted. Patients who had this access, now turned off, complain they’ve “lost something.” I think so, don’t you?

The next Open Notes paper is sure to shed more light. Brilliant.