PCORnet, the National Patient-Centered Clinical Research Network, an initiative of the Patient-Centered Outcomes Research Institute (PCORI), has put stakeholder engagement, particularly research participants, at the heart of its infrastructure. Operating as an extension of PCORI’s mission to bring patient voices to the forefront of research, PCORnet seeks to integrate a collaborative spirit across every aspect of the Network. This month we are examining how PCORnet is putting its people-centered values into action—from its Engagement Committee to its research participants.
PCORnet’s Engagement Committee: Powered by Partner Networks
PCORnet created the Engagement Committee as one of the guiding bodies for meaningful work in transforming the culture of clinical research. The Engagement Committee, comprised of patients and other representatives of PCORnet’s various stakeholder communities, works to seamlessly integrate engagement across the Network by identifying and furthering best practices, incentives, and solutions.
“The Engagement Committee
helps to define what meaningful inclusion of people in clinical research means, and my role allows me to help key stakeholders understand new, game-changing ways to engage partners and research participants in every step of the research process.”
Sharon Terry, MA
Chair, PCORnet Engagement Committee
Co-Principal Investigator, PCORnet Coordinating Center
“Over the course of my years of leading people-driven research, I have found that engagement is key to addressing the needs of people—but to ensure success, engagement must be supported with the right resources, including the support of leadership,” said Sharon Terry, Committee Chair.
“The Engagement Committee helps to define what meaningful inclusion of people in clinical research means, and my role allows me to help key stakeholders understand new, game-changing ways to engage partners and research participants in every step of the research process.”
In this video, Terry describes more detail about the history and goals of this committee, and you can watch her speak at TEDMED about her moving journey to take research related to her children’s rare disease into her own hands.
Representatives, including research participants, clinicians, and other experts from PCORnet’s partner networks, serve on the Engagement Committee to deliberate and define a variety of methods and tools using insights from their communities. For example, Rebekah Angove serves on the Engagement Committee as the Director of Engagement for the Research Action for Health Network (REACHnet) CDRN. Her involvement provides REACHnet a voice in PCORnet research, bridging the gap between clinicians, researchers, and patients.
As Angove explains in this video, being a part of the Engagement Committee empowers partner networks to take engagement a step beyond simple study participation; it is a means to cultivate rich relationships with researchers and ensure research participants are actively involved in important decision-making throughout the research process.
People at the Heart of Our Network
The Engagement Committee is essential, but this would, of course, be irrelevant without the heart of research participant engagement—the people themselves. Bill Larsen, an Adaptor for the ADAPTABLE Study (a three-year pragmatic clinical trial that will compare the effectiveness of two different daily doses of aspirin widely used to prevent heart attacks and strokes in individuals living with heart disease) believes that it is up to people like him to take initiative and really engage at the level of the research participant. Adaptors are research participant representatives who work alongside researchers in all aspects of the ADAPTABLE study, including designing the protocol and disseminating study updates. Larsen also participates in the OneFlorida-supported Citizen Scientist initiative. Citizen Scientists like Larsen are local community members who partner with scientists to conduct scientific research and answer real-world questions.
“It has become startlingly clear to me since my involvement as a Citizen Scientist and Adaptor that the role of the ordinary citizen in the research process is vastly underappreciated. From the scientific side, the researcher seems far too focused on the ‘science.’ On the other side, patients do not understand how vital their role is as a participant in research,” said Larsen. “Without greater patient participation, research simply cannot translate solutions into practice at the pace we need.”
Larsen has spent years integrating himself into research as a Citizen Scientist, even participating in a number of “design” studio reviews where Citizen Scientists can provide input toward research proposals.
The result of all these engagement efforts in research is significant: more insights that are meaningful to communities; answers to questions that have long been ignored by the medical researchers; and an empowered cadre of research participants, patients, and caregivers who finally have a voice in their own health outcomes.
“PCORI and PCORnet are setting the standard for a new era of clinical research that is driven by and for the needs of people,” said Terry. “I feel fortunate to be part of the movement that is bringing together key stakeholders in the name of better, more meaningful research, and I hope that we can join forces with all stakeholders to ignite the people-centered revolution.”
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.