About & FAQs
Vision & Charge
Patients, communities, and members of the public are essential partners to the success of clinical research. However, meaningfully engaging people and communities is not a one-size-fits-all approach. NIH believes that engagement should be tailored to the needs and experiences of people and communities, and that they should guide the direction of research that is impactful to them. This engagement should be done on an ongoing basis so that members of the public can become active leaders in all stages of the research process.
To accomplish this, NIH asked the Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) to form the ENGAGE Working Group. This Working Group will identify gaps in current NIH engagement processes and ways to promote the principles of accountability, transparency, and responsiveness to community needs. See here for the Working Group’s full charge.
FAQs
What does the NIH do? NIH is the nation’s biomedical research agency, which funds research across the U.S. to make important discoveries that improve health and save lives.
What is clinical research? Clinical research is medical research that involves people to learn more about disease and improve health. Clinical research relies on research participants, who are people who voluntarily join research studies across the Globe. Participants participate in clinical research so that more can be learned about how certain diseases affect people, how to prevent diseases, and to help ensure new drugs, devices, and intervention are safe and effective. See here for more information.
What is research engagement? Engagement is when individuals, such as patients, groups of people, communities, and/or organizations partner with researchers to plan, design, and/or conduct research so that the research and its outcomes are meaningful and actionable (especially for those who could benefit from or be affected by the research). The ultimate goal is for people and communities to guide the direction of, and partner in, research that is relevant and impactful to them.
When does research engagement happen? The inclusion of individuals and community members can be important during all stages of research, including planning and carrying out studies, analyzing results, and sharing study findings so they can be useful for real people in real communities.