Harnessing the Expertise of the Healthcare Community to Guide Outcomes Research
When we invited dozens of members of the healthcare community to gather and tell us how they thought we should spend our research dollars, we expected to hear points of view as rich and varied as the individuals and organizations in the room. We weren't disappointed.
The December 4 event, “What Should PCORI Study: A Call for Topics from Patients and Stakeholders,” was the latest in our ongoing series of efforts to engage a wide range of stakeholders to help shape our research agenda. We see these initiatives as critical tools helping us to build the portfolio of rigorous patient-centered outcomes research we will fund over time.
More than 130 people, representing stakeholders such as patients, clinical associations, health systems, industry, insurers and payers, business, hospitals and academic medical centers, policymakers and advocacy groups, took part in the workshop, sharing experiences and suggesting a range of research topics we should fund. More than 200 others registered to join us via live webcast. You can see the full list of participants here. Many seemed genuinely and pleasantly surprised to discover that a major new research institute would tap into the community to seek advice on how it should spend its substantial research dollars.
Patients and caregivers experience health and healthcare in many different ways and through a variety of healthcare professionals, systems and organizations. As a result, patients and those with whom they interact have unique insights into the important, but unanswered, questions that they face every day. Only through a process that captures and assesses those concerns and interests can PCORI hope to successfully fulfill its mandate.
The workshop gave us the opportunity to collect stakeholder suggestions for research topics in four of our five National Priorities for Research: 1) assessment of screening, diagnosis and treatment options; 2) improving health care systems; 3) addressing disparities; and communications and 4) dissemination research. The ideas we heard covered a wide range of health issues, from chronic conditions to rare diseases, from patient-clinician communication to better ways to use digital tools to more effectively conduct research and capture patient-reported outcomes.
All of these ideas will be fed into our topic generation and research prioritization process and many may be considered for inclusion in future targeted funding announcements seeking studies of specific research areas. Our goal is a diverse collection of research questions that reflect the needs of patients, clinicians and the entire healthcare community.
Workshop participants generally seemed to resonate with our vision for an active patient role in research and were eager to work together to ensure patients are effective in shaping research to suit their individual needs. We’ve clearly heard stakeholders’ desire to be actively at the table in all phases of research. We’ve also listened to those who have said we weren’t transparent enough, and continue to seek ways to meaningfully and fully engage patient, clinicians and other stakeholders.
In addition to gathering scores of suggestions for potential research topics, we found that, as happens at all of our events, we received requests from a number of groups for more focused follow-up discussions. For example, representatives of several rare disease groups expressed interest in planning a roundtable early next year to discuss issues of concern to their community. A representative of a major health insurer asked how we might try to work more closely with health plans. And representatives of three major professional clinical associations expressed interest in exploring how their networks of members and affiliates could serve as a platform for advancing patient-centered outcomes research.
The basic principle articulated by everyone at the workshop was that we must establish a new definition of a healthcare team, or, as they put it, “the new we.” We continue to be impressed with the level of interest and passion displayed by our diverse group of stakeholders and we are grateful to all the talented professionals that gave us their time and energy at the workshop.
As PCORI’s executive director Joe Selby told the participants, we hope you will continue to “embrace the opportunity to do things differently.”