Author: Sharon Terry, MA, Co-Principal Investigator, PCORnet Coordinating Center and Principal Investigator, Community-Engaged Network for All (CENA)
For decades, the clinical research community has been approaching its goals as an independent force, like a rowboat with one paddle and a single rower on a quest down the river. If we wanted an answer, we rowed toward it, and if the answer proved difficult to attain, we simply rowed harder—and yet, even with all of that effort, we still found ourselves often going in circles with little or no progress.
Thankfully, today PCORnet offers a new approach to clinical research. We know that as long as we, as researchers, are working independently, we are never going to achieve our goals with the speed, quality or agility we seek. Because it turns out that the answer was never to work harder in the first place; it was to invite more people into the boat. People bring a unique perspective to research right from the start—from determining what questions to ask, to study design, to what health outcomes matter most. In the video below, I explain how patients can get involved and be engaged in their care.
PCORnet promises an incredible new era of clinical research—but we cannot begin to make progress until we have established trust. And trust, as we all know, is earned.
That is why I am thrilled to participate in the Building Trustworthiness in PCORnet public webinar on September 16, 2016 from 1:00 pm to 2:00 pm ET. This webinar is led by the people who seek answers to health issues. We will be bringing together patients, participants, caregivers, clinicians, industry, community and advocacy groups, researchers, and the public to start to ask, “How is PCORnet trustworthy in clinical research? What more can the network do? What does it have to learn?” and “How will PCORnet facilitate authentic engagement in research?” In the video below, I describe in greater detail what we are seeking at our Building Trustworthiness events.
PCORnet is about making clinical research people-centered and people-driven, as well as inviting all the voices of the community to share input. This is not lip service; it is quite real, and the stakes are quite high. For this reason, you will also hear from Neely Williams, a patient advocate and administrator for the Community Partners Network; Jennie David, former patient advisory co-chair for ImproveCareNow; and Annesa Flentje, assistant professor at the University of California in San Francisco. Together, we will explore what we can do as a network to transform PCORnet research to a trustworthy enterprise.
Please join me on September 16 for this important webinar. Together, we can begin earning the trust of patients, health systems and clinicians to ultimately drive better outcomes for all. We are all in the same boat, so let’s figure out what it takes to paddle together.
To learn more about our goals with our Building Trustworthiness events, check out our dedicated web page.