Shared Health Data

design. deliver. better health with your own information

Shared Health Data - design. deliver. better health with your own information

Northern California transforms HIMSS with a patient centered conference. Engage!

Jan Oldenburg, Regina Holliday and Kate Christensen

Jan Oldenburg, Regina Holliday and Kate Christensen


My dear friends and colleagues Jan Oldenburg and Kate Christensen invited me to a Northern California HIMSS conference, Transforming Healthcare Through Digital Patient Engagement. It was one of the best patient/consumer oriented days I’ve had in a long time. A huge thanks go out to all the organizers, speakers and attendees. Let’s figure out how to clone it, grow it, scale it, disseminate it!

Jan, the President of the N. California HIMSS Chapter, started the day in Fairfield, California, saying

Patient engagement is about creating the world we want to live in.

Jan also rightly promoted her new book, Engage! Co-authored by Kate, Dave Chase and Brad Tritle, promotes consumer-facing health IT as a means to empower, engage and strive for patient contribution.

Regina Holliday set the stage for the day, and riveted the audience with her personal story and powerful messages — about the we-can’t-stop demanding transparency and quality health care that meets our needs. (Standing ovation – what’s new?) painted two fabulous works of art, The Heart of the Matter, and Sky. My favorite Reggie quote of the day was

You must treat every patient as the wonderful, unique person that they are

N Calif HIMSS

The power of social media was discussed by Ileana Balcu, Social Media & Communications Lead for the Society of Participatory Medicine, and Brad Tritle, Director of Business Development at Vitaphone USA. All eyes and ears were on Liz Salmi, a young adult cancer survivor and blogger on TheLizArmy.com who shared her journey of finding other cancer survivors who just weren’t like her == leading her to do more tailored networking to make her patient experience have more value.

The power and vulnerability of the caregiver was told by Nancy Burghart-Hall, CIO at MedAmerica, who shared her experience of dealing with very non-patient-centered emergency services.

I had the pleasure of co-presenting with Kate Christensen, who just retired from Kaiser as Director of Internet Services. She’s been a champion for patient digital services before most of us knew what a portal was. Now millions of Kaiser enrollees use kp.org to meet their needs, thanks to Kate’s vision, leadership and steady hand. Ted Eytan did a lovely post about Kate and her recent transition.

I got to boast about the VA’s recent expansion of personal health record data sharing — the opening of all clinical notes with patients using the PHR, My HealtheVet. We recently published a qualitative study on patient experiences of reading their notes, and Engage! pretty much sums it up. After OpenNotes, where do we go? Patient Generated Data…and participatory design.

The last group to talk was just as exciting as the first, and included Neng Bing Doh, CEO of the texting platform start-up, Healthcrowd. Neng gave us a glimpse of a potentially powerful engagement tool: using SMS feedback to segment the consumers and optimize usage. We also heard from Elise Singer from Share the Visit; Sonia Samagh from Ellipsis Health; Ron Leutmer of Healthcare Anytime; Kerri Hickey from Mobile Heartbeat; and Jeff Pollard from 23andMe.

The day was short but oh so sweet. Thank you, Jan, for allowing me to connect, participate and spread the KoolAid. :-)

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!