title: Authentic Engagement Of Patients And Communities Can Transform Research, Practice, And Policy.
abstract: The engagement of patients and the public is increasingly important in the design and conduct of research. Some researchers still cling to the outdated notion that laypeople cannot contribute meaningfully to science; for some, "community engagement" is another term for recruiting patients for trials. Authentic engagement encompasses far more, involving stakeholders as full partners in all phases of research, as research funders increasingly require. Such engagement, although challenging, can enhance the quality and impact of studies on many levels, from ensuring that data are relevant to users' needs to elevating the moral plane of research by showing respect to patients and vulnerable populations. We share examples from our work, including the engagement of patients in a study of cancer screening decisions and the engagement of inner-city residents in addressing social determinants of health. These engagement principles are of growing relevance to health systems and policy makers responsible for population health.
authors.affiliation: Steven H. Woolf (swoolf@vcu.edu) is director of the Center on Society and Health and a professor in the Department of Family Medicine and Population Health at Virginia Commonwealth University, in Richmond.
authors.forename: Steven H
authors.initials: SH
authors.lastname: Woolf
authors.affiliation: Emily Zimmerman is a senior researcher at the Center on Society and Health and an associate professor in the Department of Family Medicine and Population Health, Virginia Commonwealth University.
authors.forename: Emily
authors.initials: E
authors.lastname: Zimmerman
authors.affiliation: Amber Haley is a research epidemiologist at the Center on Society and Health in the Department of Family Medicine and Population Health, Virginia Commonwealth University.
authors.forename: Amber
authors.initials: A
authors.lastname: Haley
authors.affiliation: Alex H. Krist is an associate professor in the Department of Family Medicine and Population Health, Virginia Commonwealth University.
authors.forename: Alex H
authors.initials: AH
authors.lastname: Krist
mesh_terms: D003256:Community Participation / Q000706:statistics & numerical data*; D055812:Community-Based Participatory Research; D019033:Delivery of Health Care, Integrated / Q000458:organization & administration*; D005260:Female; D006291:Health Policy; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans; D008297:Male; D017063:Outcome Assessment, Health Care; D010358:Patient Participation / Q000706:statistics & numerical data*; D011050:Policy Making; D014481:United States
keywords: Community based participatory research; Patient centered outcomes research; Patient engagement; Population health; Stakeholder engagement