Shared Health Data

design. deliver. better health with your own information

“It’s Hosted” — The Walking Gallergy Jacket No. 122 by Regina Holliday

I head to HIMSS 2012 in Las Vegas tomorrow. It will be a landmark convention for me, because I get to wear the latest addition to #TheWalkingGallery — a jacket pained by @ReginaHolliday.

I can’t say enough about Regina and her passion for transformation in healthcare. It’s an honor to join a group committed to participatory medicine, telling stories through art, separately and together.

Regina titled the jacket It’s Hosted, which states ‘Over 50% of Physicians are using Electronic Medical Records’ and ‘I too Prefer EMRs…because Hosting Removes Dangerous Barriers between Me and My Data’. Also included is a picture of e-Patient Dave‘s ‘Gimme My Damn Data’ mug. Yeah!

It’s modeled after cigarette ads from the 1930′s and 1940′s. I have a large collection of these ads, amazed since I was young at how imagery having nothing to do with tobacco has been used for 100 years to successfully sell it. I’ve always thought healthcare could do a lot better if it learned from the masters of marketing.

Thanks, Regina. See you in Las Vegas! I hope we don’t have to walk through too many smoky hotels, restaurants and casinos to tell our stories….

Calling all patient advocates: Patient Centered Outcomes Research Institute needs your feedback

Patients: Your Researcher Will See You Now!

The Patient Centered Outcomes Research Institute (PCORI) is soliciting input about patient-centered outcomes research. Patient Voices Needed Now!

PCORI is an independent, non-profit established by Congress through the 2010 Patient Protection and Affordable Care Act. Its mission is to: help people make informed health care decisions by producing and promoting high integrity, evidence-based information – that comes from research guided by patients, caregivers and the broader health care community.

The legislation creating this group, governed by a 21-member Board, is fascinating. Patient advocates must be part of the process: “For identifying research priorities, they shall take into account…a number of factors including variations and health disparities, the potential for new evidence to improve patient health, well-being, and the quality of care…as well as patient needs, outcomes, and preferences, the relevance to patients and clinicians in making informed health decisions…..

This is enlightenment in medical research.

All funded studies will have a strong orientation to the patient perspective and all will have patients involved in the development of the research, its governance and oversight, and its dissemination strategy.

While PCORI touts the Patient Voice, they will be hard pressed to ensure there is rigorous patient contribution. Jessie Gruman’s Prepared Patient Forum post Getting the Patient’s Perspective in Research: Will PCORI Deliver on its Promise? nicely describes the effort it will take to get it right. As a physician-researcher passionate about Participatory Medicine, I agree with her that scientists won’t use patient-designed methods unless they’re forced to, and that patient advocates will find researcher jargon hard to comprehend. One criteria in the PCORI framework (See Figure) says ‘Patient Centeredness.’ What does this mean? This vague term needs to be carefully defined, so there’s no room for varied interpretation.

The Draft National Priorities for Research and Research Agenda Version 1, is packed with great intentions. Patient advocates involved in governance, and reviewing research proposals. Studies on patient-centered treatment options and tools that help with informed decision-making. Focus on health system factors that improve shared decision-making. That’s easy – I’m totally in.

Are there lost opportunities? An imbalance of priorities? Yes, I think there are flaws. I’ll add my comments on their feedback site. Some of them here –

1. Research must use participatory design, with patients not just reviewing proposals but joined with researchers, all through each project.

2. Some research should study patient advocacy and participation — as an intervention to improve health system processes and as a means to achieve better patient experiences.

3. Research should include patient-designed measures. There isn’t much in the Draft Agenda that talks about patient contribution to measures. Patient centered does not mean Patient designed.

4. Research should include designing better health IT to collect data directly from patients. After all, if we’re trying to get to patient-centered outcomes….LET PATIENTS HELP! The Society for Participatory Medicine (SPM) and others should use PCORI as an opportunity to be loud & clear about this. This is disruptive medicine — so if PCORI doesn’t get it right from the start, it could be expected.

5. Re-distribute funding more to patient participation issues rather than comparative assessment. There is much science on what helps health outcomes, but less on how patients can be engaged using effective information-sharing and communication techniques. Only 10% of funding is allocated toward communication and only 20% for methodology advances. If we want to practice New Medicine, we’re going to need more than 30% of funding to do New Research.

6. Increase patient advocates on the Board. This isn’t about the Research agenda, but if they’re asking for feedback….it seems reasonable to provide this particular input. Why not more patient advocates? Maybe the bar was set too high? They didn’t look far enough? Not pay for people’s time? At the VERY LEAST, organizations such as SPM or Planetree or the Institute for Patient and Family Centered Care or the American Academy on Communication in Healthcare or the Center for Advancing Health should have a big seat at the big table.

So don’t walk, run, to PCORI’s agenda and shine some constructive light. You have until March 15th.