Engagement in Action: A Report from PCORI's National Dialogue

In my years as a family doctor, I’ve listened to and spoken with thousands of patients and their family members, trying my best to help them make difficult and sometimes scary healthcare decisions. In my career as a researcher, I’ve spoken to hundreds of professional groups, presenting or commenting on the latest studies of better ways to treat any number of challenging medical conditions.

But I’ve not experienced anything quite like the gathering I was pleased to host on February 27 – PCORI’s first National Patient and Stakeholder Dialogue at the National Press Club in Washington, DC.  Nearly 400 people registered to attend in person, and another 500 signed up to join us via a day-long webcast.

This event was designed to gather public input on our draft National Priorities and Initial Research Agenda, which we released on January 23.  And we did indeed get plenty of comments. But it also became clear to me that this forum, our largest engagement activity to date, in essence was PCORI’s “coming-out party.” It was our chance not just to tell but to show our many stakeholders -- patients, caregivers, advocacy groups, professional societies, industry associations and others -- that we’re committed to hearing from them on an ongoing basis as we shape and refine our work.

And it was a chance to affirm that PCORI aims to put the needs, interests and concerns of patients and caregivers at the center of the research we fund. That starts with selecting the research questions and designing the study, through the way studies are conducted, and ultimately the ways that findings are communicated to those who need the information to make better-informed healthcare decisions.

We’re pleased that those who joined us reflected the diverse mix of stakeholders that we serve. Thirty percent identified themselves as patients or caregivers, 18% as advocates, another 18% as researchers, 15% as clinicians, 12% as being from industry, 4% from government and 1% from payers. This was just one in a series of events we plan around the country to hear from these many audiences. We hope the result will be an ongoing conversation about how we can most effectively support research that will lead to better-informed healthcare decision-making.

We saw the makings of this conversation during our Dialogue event. It struck me as I listened to those who spoke formally as well as caught bits of informal interactions throughout the day that not only was a highly diverse gathering of stakeholders talking to us, they also were talking to each other. For it is through such ongoing engagement among and between those whose views are strongly held but not always shared that we will do our work.

But even with such a diversity of views, one theme stood out clearly – the promise and the excitement of the difference PCORI could make by putting patients first in conducting outcomes research. Patients have been telling us over and over again that their needs and perspectives are different than those of researchers and clinicians, and that those differences not only matter but need to be viewed as equally important to the research process.

Dr. Harlan Krumholz, one of PCORI’s Board members, spoke for all of us when he welcomed those attending to “the PCORI family.” “Ultimately, we’re going to be listening to a lot of stakeholders but our true North is going to be … patients and their caregivers … for whom the consequences of a [healthcare] decision is the greatest,” he said. “Help us frame a new way of thinking about how the healthcare system ought to operate.”

One patient advocate commenting on our event on Twitter called Dr. Krumholz’s comments “a pledge of allegiance” to patients. Input from the dialogue event, feedback from additional forums, including focus groups, and formal public comments received through PCORI’s website and by mail, all will be carefully considered in modifications to the draft priorities and agenda.

We look forward to continuing the dialogue with our many stakeholders as we progress in our work.  That will be the singular focus of our newly appointed engagement team. You can stay in touch with them and the rest of us by joining our mailing list.

Our Dialogue was a special opportunity to make our vision real to many people we’d met before and many others who were meeting us for the first time. It was a great reminder of what brought me and my colleagues, to PCORI. And I hope it will bring you into our “family” as well.