Case Studies
Case Studies
NIH has compiled a collection of easy-to-use summaries of tools and strategies for increasing public engagement in clinical research (see here for FAQs on engagement). These tools and strategies can be used by researchers, patients, patient advocates, caregivers, and communities to strengthen engagement approaches. This resource is intended to be a collection of engagement resources, tailored to the specific needs of the user and their goals. Please check back to this webpage regularly, as it will be periodically updated with new summaries.
Definitions for each engagement objective can be found in the glossary.
Inclusion of People with Lived Experience (PWLE) in Research Prioritization
Inclusion of PWLE in research prioritization efforts requires a commitment of staff time, and a central collection of resources, tools, etc. available to all staff.
Recommendations for Community Engagement
The Recommendations for Community Engagement were developed by community representatives and NIAID staff to offer a step-by-step approach to developing and maintaining a Community Advisory Board.
NIH Community Engagement Alliance Consultive Resource (CEACR)
CEACR offers personalized consultations for NIH-funded research teams on ways to work with the community impacted by their research.
Toolkit for Patient-Focused Therapy Development
The OSP Scientific Data Sharing Policy Division is responsible for biomedical research policy development in two program areas: Genomics and Health.
Pathways to Health for All
The Pathways to Health for All Report recommends community engagement as one way to improve health equity and health disparities research programs.
Faster Together
Faster Together is a free online course designed to help researchers understand past research abuses and their influence on minority population participation in clinical trials.
Toolkit for Clinical Trial Participants and Community Members
The Toolkit for Clinical Trial Participants and Community Members provides information on clinical trials to help individuals decide if they would like to take part in a clinical trial.
Participant Ambassadors and Governance Model
The All of Us Participant Ambassador and Governance Model is one way to include participants’ ideas in the direction of a large research network or program.
Good Participatory Practice Guidelines
Good Participatory Practice (GPP) guidelines provide a blueprint for engaging patients, caregivers, and community members in research.
Coalition of Patient Advocacy Groups
The Coalition of Patient Advocacy Groups works together to find the causes of all rare diseases studied in the Rare Diseases Clinical Research Network.
Community Partnerships to Advance Science for Society (ComPASS)
ComPASS is an NIH program that directly funds community organizations to create and test interventions.
NINDS Nonprofit Forum: Progress Through Partnership
The Nonprofit Forum happens once a year and brings together diverse voices in the neurological disorder community to discuss research priorities and build relationships.
Community Convenings with Faith-Based and Community Partners
Community Convenings are in-person conversations between community members and research to learn about All of Us research results.
Building Research for Academic and Community Equity (BRACE) Toolkit
The BRACE Toolkit provides information and templates for both community organizations and researchers to help them work together during the research process.