PCORI is a unique component of the health research enterprise, in large part because of the focus on what matters most to patients, as the organization’s name implies. However, we also engage a much broader community of health and healthcare stakeholders.

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PCORI Leadership by PCORI Executive Director Nakela L. Cook, MD, MPH.
Nakela L. Cook, MD, MPH
Executive Director, PCORI

As the mission states: “PCORI helps people make informed healthcare decisions, and improves healthcare delivery and outcomes, by producing and promoting high-integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader healthcare community.”

That broader healthcare community includes clinicians, payers, purchasers, health system administrators, and researchers—and we continue to prioritize outreach to other groups as well, to listen to their voices and understand their lived experiences. The US healthcare system is incredibly complex, and if we are to truly do our part to enhance the healthcare system for the benefit of all, we must better understand the perspectives of everyone involved.

Understanding all perspectives is more important than ever, in what feels like a pivotal moment for the nation. We are now into the second year of a pandemic that has claimed hundreds of thousands of lives and brought challenges for all of us. As well, the pandemic has highlighted the grievous inequities in our health system, and society at large, as evidenced by much higher rates of hospitalization and deaths for Black, Hispanic, and other historically disadvantaged people. The racial justice movements that were reenergized by the murder of George Floyd and so many others have also amplified the pressing need to reexamine the structural inequities that still impact the lives of so many.

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Patients and other stakeholders contribute to engagement sustainability by... helping determine... research partnerships and capacity, research priorities, conduct of research, dissemination and implementation, and policy and practice. Involved how? Relationship and PCOR Skill Building... Topic Solicitation and Input, Advisory Panels, and Workshops, Research Teams, Sharing and Uptake of Findings, Impacting Institutional Policies and Clinical Practices.
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Overcoming these inequities means addressing the issue of trust. The pandemic, and the rollout of vaccinations, has clearly illustrated the deep distrust that many Americans have in some of our institutions and in the credibility of scientific information. We know that lack of trust in health care and health research is also a significant issue for many historically underserved or excluded populations.

Our current environment highlights more than ever the need for the work that PCORI does. At the heart of our work is engagement—reaching out to patients and other stakeholders, listening to what they say and experience, and using that information to guide research that provides answers to the questions that are important to them. And at the heart of engagement is trust. This is a time for PCORI to double down on our approach, to continue building trust within communities and in PCORI through engaging all stakeholders.

The value of stakeholder engagement has been clearly evident during our ongoing strategic planning process, which began with gathering and synthesizing input from patient and advocacy groups, from community-based organizations and groups serving historically underserved communities, from Congress, from clinicians and payers, and from PCORI advisory panels and dialogues held during PCORI’s 2020 Annual Meeting.

At the heart of our work is engagement—reaching out to patients and other stakeholders, listening to what they say and experience, and using that information to guide research that provides answers to the questions that are important to them.

At one of these events, participants were discussing ways to update and refresh PCORI’s five National Priorities for Research, which formed the starting point for the National Priorities for Health that are currently in the last stages of refinement. On the topic of health disparities, one of the participants at this forum made a bold suggestion—to reframe the priority of reducing disparities as achieving health equity. Many others provided similar comments as well, both during the initial planning stages and during the 60-day public comment period on the proposed National Priorities for Health. Throughout this process, including in the first of our ongoing series of regional events in West Virginia, PCORI received extensive feedback representing broad perspectives. I am sure that upcoming events in Maryland and Colorado will also yield exciting insights.

This stakeholder-initiated shift in direction ultimately led to one of the five National Priorities for Health—Achieve Health Equity. As PCORI’s Board of Governors reviewed all of the input, four other clear priorities emerged, along with a growing conviction of the need to transition from priorities for research to priorities for health. This focus on health, rather than research, strengthens the focus on the ultimate goal of all of our work, improving patient outcomes. It requires a broadening of our approach and the fostering of partnerships with new stakeholders. We aim to establish a stronger focus in our funding on the broader context of health—beyond the clinical encounter to integrate influences on health from spheres like education, housing, and public health. This will allow us to more deeply understand the many factors that affect health and well-being at the community level.

The Board of Governors, which represents many different stakeholder groups, is the most visible component of PCORI’s inherent commitment to a diversity of perspectives, which extends through our advisory panels and frequent stakeholder interactions and group convenings. Over the past decade, more than 850 different organizations have participated in PCORI workshops, work groups, and roundtables; nearly 200 stakeholders have served on advisory panels; and more than 600 patients and other stakeholders have served as merit reviewers—an area where PCORI’s approach was particularly groundbreaking.

As we redouble our efforts to engage with a wide variety of stakeholders, and to build trust, the lessons we have learned over time will stand us in good stead. PCORI learned early on that engaging stakeholders effectively requires a systematic, thoughtful approach and that patients appreciate more than just an invitation to the table; they want to be equipped to feel productive, just as the scientists on the research teams value training that helps them work more effectively with patients. PCORI’s commitment to training and mentorship is evident in a new set of training modules—Building Effective Multi-Stakeholder Teams—designed to foster inclusion and trust for all team members, which is the basis for effective participation.

The priority that grew from that comment in a stakeholder engagement event—achieve health equity—will be central to our work in the coming years. Patient-centered research has an inherent connection to equity because it seeks to include all voices, and PCORI will be redoubling our efforts to seek input from those whose voices have historically not been heard. Achieving health equity is an audacious goal, but working together with our stakeholders and guided by their wisdom, experience, and insights, we aim to achieve it.

Seeking the diverse perspectives of @PCORI's stakeholders is more important than ever. In her latest Leadership Perspective, Executive Director Nakela L. Cook, MD, MPH, discusses the critical role stakeholders play in the organization's work. https://pcori.me/3p02phr

A promo image for the Building Effective Multi-Stakeholder Research Teams resource showing a group of people of different ethnicities seated at a table for a discussion.


Published: October 19, 2021

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