Date: March 17, 2016
Author: Sharon Terry, MA, Co-Principal Investigator, PCORnet Coordinating Center and Principal Investigator, Community-Engaged Network for All (CENA)
People-powered research is what’s needed to drive changes in research and health care. If people engage in health research the same way that they engage with other industries, with the same passion that they make decisions about books, music, and cars, then people themselves will power research forward.
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. That’s why PCORnet, the National Patient-Centered Clinical Research Network, is committed to engaging people from the conceptualization of a research project through the dissemination of the results. Supported by Patient-Centered Outcomes Institute, PCORnet harnesses the power of data and partnerships to conduct health research faster, with more power, and less expensively, than is now possible.
But where do we begin? People-powered research begins with trust. Before PCORnet can engage people in its community of research, we need to build relationships – relationships that are built on trust.
That’s why I am excited to take part in the Building Trustworthiness in PCORnet meeting, March 28-29, in Washington, DC. This interactive workshop brings together patients, participants, caregivers, clinicians, industry, community and advocacy groups, the research community, and the broader public at large to start to ask, “How can PCORnet foster trust in clinical research?” and “How will PCORnet facilitate authentic engagement in research?”
It’s time to come together, as a community, to address important topics and to ask and answer critical questions: What defines trustworthy engagement? What is the best way for people to engage in research? How are underserved communities invited and central to the dialogue? How do we share health data to further research, while respecting individual and community preferences?