Tag Archives: consumer

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


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. 🙂

Doctors on Open Notes: “It was easier than expected”.

Open Notes Investigators Suzanne Leveille, Jan Walker & Tom Delbanco at Beth Israel Deaconess in Boston

We’ll look back on this day as a historic turning point in the transparency of medical records, moving toward fully sharing notes with patients. Open Notes, a research study at 3 large medical systems, shared their results. Findings are momentous: a WIN for patients and a NO LOSE for providers.

It’s been 40 years since Shenkin and Warner predicted, in the New England Journal of Medicine, that patients given “complete and unexpurgated copy of all medical records, both inpatient and outpatient” would enhance patient autonomy, improve patient-physician relationships, and serve as an educational tool (no access to this 1973 paper!). With Open Notes, we have substantial evidence that patients benefit and clinical fallout doesn’t happen.

Congratulations to Tom Delbanco, Jan Walker and colleagues for their dedication and effort to pull off a 3-site study. Among over 13,000 patients, almost all opened their notes at 2 sites and half did so at 1 site. Patients better understood their health condition, were more prepared for visits and felt more in control of their care. Patient activation happens. Providers, many who were skeptical about patient benefits, continued to underestimate these benefits even after 1 year. Why? Because they didn’t know when patients were reading their notes! Only 1 out of 5 patients talked to their doctors about the notes! Most importantly, providers were less likely to say their work increased. The authors even looked at secure email volume before and after: no change.

So, it’s a no brainer for patients. But for providers, too. Some favorite quotes from the paper:

When asked about the most difficult aspect of open notes, the most common comment among the 77 out of 104 responding PCPs was that nothing was difficult and that they experienced no changes in their practice.

Although several doctors acknowledged fears about additional time burden and offending or worrying patients, they wrote that these concerns did not materialize. Some commented on the extra time needed for writing, editing or explaining notes to patients. Among them, some framed such efforts as learning ‘better documentation – a good thing.’

In a post 2 years ago, I thought Open Notes would be a Slam Dunk. How my predictions fared, based on Open Notes results:

1. Once patients see their notes, they like access. 99% want to continue.
2. Medical jargon doesn’t get in their way. >90% were NOT confused or worried.
3. Some content surprises but people value it. PENDING study of patient comments.
4. Many say notes are wrong and want corrections. 60% want to add comments.
5. Seeing notes helps manage problems better. >70% reported better self-care.
6. It’s uncommon for a person to be distraught. Only 1-2% felt offended.
7. Many feel more prepared for in-person visits. 69%-80% agreed.

I’ve been studying open notes at the Veterans Health Administration for the past few years. The first version of the My HealtheVet PHR gave patients access to all notes. My research team and I just submitted our results for peer review; our findings fully support and complement the Open Notes study. It’s a really exciting time for participatory medicine, re-designing health records, and the journey toward open notes for Veterans & family by expanding Blue Button. Let’s get going: it’s gonna be awesome.

The Health Care Blog: Robert Wood Johnson Foundation’s Steve Downs – Open Notes Results Are In
ePatients.net/Society for Participatory Medicine: OpenNotes: The results are in. GREAT news for patient engagement.
Ted Eytan: Open Notes results are in…

The Journey Toward Participatory Design – Talk at AAHB 2012

Recently I had the delightful privilege to be asked to speak at the annual conference of the American Academy of Health Behavior. Unlike many conferences I attend, it was intimate, allowed plenty of time to network and relax, and was at a wonderful place – the Four Seasons Hotel in Austin, Texas. Planning was done by my long-time colleague Herb Severson, investigator at the Oregon Research Institute in Eugene, and Elaine Borawski, AAHB President and investigator at Case Western.

The March meeting theme, Applications of Technology in Health Behavior Change Research, brought outstanding presentations, discussions and a hands-on tech demo session. It was fun to catch up with health IT leaders including David Ahern, advisor for RWJF’s Aligning Forces for Quality and Project Health Design, the NCI’s Brad Hesse, Kevin Patrick at UCSD and the Center for Wireless & Population Health Systems, and Audie Atienza, HHS Technology Advisor and leader for mobile health, David Abrams at the Legacy Foundation, Paul Estabrooks at Virginia Tech, and Hope Lab’s Ellen LaPointe.

It was a huge treat to meet BJ Fogg and hear him talk about persuasive technologies. Even better, to hear examples of taking small steps that make a big difference in engaging people in change. If he’d ever entertain a Boot Camp for VA leaders and innovators, we’d be swimming in a Perfect Storm…

I talked about leveraging technology to Let Patients Contribute. I see a ‘journey’ toward participatory design. Some years back (not long ago!) innovators promoted information therapy – providing patients “information prescriptions.” This was followed by patient centered medical homes, or team-based proactive care, with primary care on steroids and all other care that’s coordinated. Participatory medicine — our current destination — is about shared decision making, engaged and empowered patients and families, and liberal use of electronic tools used by patients/consumers. The ideal destiny, however, is participatory design, where patients and families are an integral part of development and improvement…in an ongoing and continuous manner. Some are moving toward this, but it’s still the exception, not the rule.

What will it take? How do we increase consumer demand for participation and contribution? Will we know a tipping point when we’re in the middle of it?

All my slides are available at the AAHB website, here. The last few slides are some findings from open notes/shared clinic notes at the VA. More to come, very soon, on this truly exciting study! Let Patients Contribute!