Maintaining Momentum, Implementing Patient Input

It’s hard to believe that nearly a month and a half has passed since our first patient engagement workshop, Transforming Patient-Centered Research: Building Partnerships and Promising Models. I continue to reflect on all that you shared, the resulting “community” that is emerging, and the principles and best practices that you helped shape regarding patient engagement in research.

I continue to hear from many of you and we at PCORI continue to think every day about how to best infuse your ideas and your vision into our work. I'm pleased to note that many of you have remained engaged in PCORI-related activities:

• Workshop participants from Boston and the surrounding area, including Dave deBronkart, Danny van Leeuwen, Cristin Lind, Sally Okun, and Amy Whitcomb Slemmer, offered public comment at PCORI’s Board of Governors meeting on November 19. Danny was featured in an article about PCORI’s engagement work after the meeting.
• Greg Biggers and Helen Haskell represented patients on a panel on the future of patient-centered outcomes research at PCORI’s December 4 workshop titled, “What Should PCORI Study? A Call for Topics from Patients and Stakeholders.”
• Linda Morgan represented the patient voice at PCORI’s December 5 workshop, “PCORI Methodology Workshop for Prioritizing Specific Research Topics.”
• Kelly Young offered a patient perspective on patient and researcher partnerships at the Institute for Healthcare Improvement’s annual congress on December 9.

We will publish a report from the workshop in January that captures your ideas and recommendations from the event. For a preview of the topics the report will cover, you can read more about the workshops five breakout sessions. The report will inform our Board and staff’s decision making on best practices and opportunities in patient engagement in research. I hope it will serve as a discussion point for all of our stakeholders as we continue to grow and evolve as a patient-centered research organization.

Pending that, let me tell you a bit about how PCORI is incorporating your ideas into our work. Two ideas emerged from the workshop that we’re already considering for implementation. We are exploring the creation of a micro-contracts program to support communities in research partnership development activities. We are also looking into an ambassadors program to equip patients and other stakeholders with tools to get more members of their communities involved in research, and to serve as a valuable resource for PCORI.

Throughout the workshop, participants both in person and online asked to know more about the nearly 150 individuals assembled to provide input on PCORI’s policies and programmatic initiatives. So we've posted a list of the attendees with any affiliations they might have provided, along with their home cities and states. Many of you also wanted to know more about who attended, what conditions or interests they represented, and what they thought of the workshop. So here are some data we've collected on that.

Seventy-five percent of participants identified themselves as patients, caregivers or patient advocates. The remaining participants represented a cross-section of other healthcare community stakeholders including clinicians, providers, payers, insurers, industry and researchers. This ratio is exactly what we sought, as we wanted this to be a patient-led conversation with input from the other key stakeholders who help patients every day strive to achieve their preferred health outcomes. Women comprised 77% of our attendees, which equaled the ratio of those who applied to attend. We hope to have more men involved in the future and we welcome your ideas on how to best reach out to them for future activities.

The number of diseases and health conditions represented at the workshop was significant and wide-ranging. Arthritis, autoimmunity, cancer, cardiovascular, developmental, diabetes, genetic, hospital acquired infections, hepatic, mental health, metabolic, neurological, pulmonary, respiratory, renal and skin disorders were among the diseases and conditions represented. This diversity of viewpoints contributed to robust, balanced discussions.

In terms of racial representation, the demographics of our participants generally reflected the United States with one notable exception. African Americans, for example comprised 12% of our participants, but only 4% self-identified as Hispanic or Latino, despite accounting for 16% of the U.S. population. This did not go unnoticed by PCORI staff. We plan to hold targeted events and roundtables in the future to ensure the perspectives of this —and other key population groups — are well represented in our work.

We were pleased that all areas of the nation were well represented, and we look forward to meeting more of our stakeholders closer to their own homes as PCORI’s engagement events take to the road in 2013.

At the end of the workshop, we asked participants to evaluate the event for its effectiveness in providing useful information, inviting their feedback and fostering collaboration. More than two-thirds of the participants responded and we were very encouraged by the results.

Participants did note three areas where we can be more helpful:

• Providing clearer descriptions of patient-centered research.
• Helping individuals better understand different models of engagement.
• Providing more information to help individuals actively participate in research.

We also received valuable input from patient blogs encouraging us to engage more through social media and to consider more creative forms of convening such as “unconferences.” Above all else, the workshop participants validated and endorsed the vital role patients and other stakeholders can play in advancing patient-centered research. Patients are ready to be partners in research – in suggesting and vetting research questions, as members of research teams, and as partners in sharing research results. To help encourage such partnerships, I'm pleased to tell you that another idea we've heard about from many of you is now a reality. We've partnered with Health 2.0 to launch the PCORI Patient-Researcher Matching Challenge, a competition open to all to propose or create a system that would connect health researchers with patient partners.

I'm reminded by all of this work that we're charting new territory together. As we do, my colleagues at PCORI and I very much appreciate your continued energy and contributions. I am confident that PCORI can capture the passion of patients, caregivers and advocacy organizations and use it to enhance the research model and improve the quality of information available to those making healthcare decisions.