Guest blogger Susan Woods, a physician and SPM board member, urges patients to help shape PCORI’s draft National Priorities for Research and initial Research Agenda, and offers her own comments here. The public comment period ends at 11:59 pm EST on March 15.
Patient voices are needed now!

The Patient Centered Outcomes Research Institute (PCORI) is soliciting input about patient-centered outcomes research. We blogged about this when they were seeking people to apply to be participants. Now the deadline to submit your comments is almost here.

PCORI is an independent, non-profit organization 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 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. The law also states:

“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 challenged to ensure there is rigorous patient contribution to their mission. A key concept in the PCORI framework is “patient centeredness.” But what does this mean? This vague term needs to be carefully defined, so there’s no room for varied interpretation.

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 and researcher who is passionate about participatory medicine, I agree with her that scientists won’t get this right unless they work closely with patient advocates. If not, methods and measures won’t truly be patient-centered. According to Jesse, “If the signs of success of patient involvement in patient-centered outcomes research are not clearly defined (they are not now), methodological standards cannot be set to achieve them.”

The draft National Priorities for Research is packed with great intentions — having patient advocates involved in governance and reviewing research proposals — and I’m totally in. (Note to patient advocates: if you think medical jargon is hard to understand, wait until you see research jargon). It will be great to have studies focused on patient-centered treatment options and tools that help people make informed decisions about their health.

Are there lost opportunities? An imbalance of priorities? Yes, I think both. I added my comments on their feedback site, and so should you. Here are some of my thoughts:

1. Research must use participatory design, with patients not just reviewing proposals but joined with researchers, all through each project. Especially at the beginning, when researchers are trying to identify the “purpose.”

2. 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 about the patient contribution to measures. “Patient-centered” does not necessarily mean “patient-designed.”

4. Research should include how to design great health IT to collect data from patients. After all, if we’re trying to get to patient-centered outcomes….(Hello!)

5. Put more funding toward patient participation 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 for 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 the number of 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 aren’t there 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, the American Academy on Communication in Healthcare, or the Center for Advancing Health should have up-front seats at the big table.

Society for Participatory Medicine members and others should use PCORI as an opportunity to be loud & clear about getting patient centered outcomes right. This is disruptive medicine and research — it’s going to be a journey. Your voice will help PCORI get it right from the start, so we get there sooner.

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

CLICK HERE TO SUBMIT COMMENTS to PCORI.