Tag Archives: meaningful use

Patient portals, Blue Button & OpenNotes are the next generation of quality.

It’s been awhile since my last blog post. Summer does that. Particularly if there’s a winning combination of sun, beach, family, fresh corn (I heart Cape Cod). You get my drift. The right factors combine, giving you a great experience.

The same thing goes for digital tools. We intuitively know what’s needed. Easy login. Nice interface. Valuable functionality. Bringing the right information at your fingertips when you need it.

Making an application easy to use and beneficial doesn’t sound so hard, right? Yet why does it take so long for health care to figure this out?

I was asked to give a webinar on the topic of Patient Portals for Maine’s HealthInfoNet last week. I focused on the combination of features that bring the most value – in other words, what people need (based on what they use) and how positive change can happen – based on evidence and experience. We have a rapidly expanding literature about this information, and this data needs bright lights shining on it, firing it up.

I did a back of the envelope summary of some evidence. Not a systematic or exhaustive synthesis, but my cumulative view of a continuously expanding bibliography of relevant papers and presentations.

Co-presenters included Steve Bien, a physician at Wilson Stream Family Practice, the first independent practice to use Maine’s health information exchange. As an early adopter, Steve touted the use of secure email, remarking that online communication not only meets patient needs but reduces workload and offers efficiency. Nice to hear that from a small practice.

Adding the patient voice to the panel was Ann Sullivan, advocate and HealthInfoNet Board member. She provided insightful, day-to-day experience of how eHealth tools add value by fitting into the patient workflow (life!) through convenience, access and helping with self-care.

Thanks to Gemma Cannon, Service Coordinator for Maine’s Regional Extension Center, for convening the group to focus on patient meaningful use!

Slides from the @hinfonet webinar are available from HealthInfoNet and on slideshare.

New big kid on the block: VA joins OpenNotes as a partner. Tipping Point?

Today the MyOpenNotes website announced the Veterans Health Administration joining the Robert Wood Johnson Foundation initiative as a partner. Providers partners – Beth Israel Deaconess Medical Center, Harborview Medical Center, Geisinger Health System, MD Anderson Cancer Center – are fully committed to give patients online access to clinical notes.

ON Sharing VA

The VA’s more than 1 million authenticated users of My HealtheVet personal health record can use Blue Button ‘Download My Data’ to view, download or print all clinical notes in their health record, plus get test and imaging results. Plus a Continuity of Care Document summary of their health information. Does it include specialist notes? Yes! Mental health notes? Yes! Emergency room notes? Hospital discharge notes? Yes, yes and yes! How cool is that?

As the VA goes, so goes the nation? Hope springs eternal for 2013 to be the OpenNotes tipping point, leading to rapid dissemination of Blue Button WITH NOTES.

There are lots of people who had the vision for this, and have worked very, very hard over the years to make this happen. Just to cite a few:
Rob Kolodner, MD, former CHIO, and Ginger Price, former My HealtheVet Program Manager;
Theresa Hancock, Director, Veterans/Consumer Health Informatics Office (V/CHIO);
– Paul Nichol, MD, and Linda Kinsinger, MD, former Chairs, My HealtheVet Clinical Advisory Board;
Kim Nazi, PhD, V/CHIO Analyst, PHR expert & researcher;
Peter Levin, PhD, former CTO & Blue Button pioneer;
– so many dedicated federal leaders and workers;]
Markle Connecting for Health Workgroup, original Blue Button Think-Tank.
– Carnetta Scruggs, My HealtheVet Development Team; and of course
– Veterans and families, who consistently ASK for access to their health information, including NOTES…

A huge shout out and thank you to all OpenNotes leaders, supporters, promoters, researchers, and users. In particular to the leadership of Drs. Tom Delbanco and Jan Walker!

I’ve commented before how Blue Button is just the beginning of the Deep Blue Sea (it’s a jelly fish, after all…). With the VA now meeting this audacious goal…the sea just got a lot less deep. The last mile is to make the information much more user-friendly…easy to use and easy to read and act on. In other words, have the notes and shared health data serve be flotation device as they go for a swim 🙂

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!