Community-Based Participatory Research (CBPR)

In traditional research, community members primarily participate as research subjects. In CBPR, community members are also active partners in the research process and may contribute their knowledge, experience, and expertise throughout the study.

Community partners may:

• Help identify research priorities and develop the research question
• Contribute to study design
• Assist with participant recruitment and data collection
• Help interpret study findings
• Participate in disseminating results and implementing solutions within the community

Because CBPR emphasizes shared decision-making and collaboration, it may not always follow traditional research models.

Community engagement exists along a continuum, ranging from traditional investigator-led research to full community partnership.

As community engagement increases:

• Decision-making becomes more collaborative.
• Community priorities have greater influence on the research.
• Study design may become more responsive to community needs.
• Community partners take on increasingly active roles throughout the research process.

Successful CBPR is built on strong partnerships between researchers and communities. These partnerships typically include the following principles.

Shared Decision-Making

Researchers and community partners collaborate throughout the research process, from planning through dissemination of results.

Co-Learning and Mutual Benefit

Researchers and community members each contribute valuable expertise and benefit from the partnership.

Community Relevance

Research addresses priorities identified by the community and is designed to produce meaningful, actionable outcomes.

Trust and Respect

Partnerships are built through transparency, mutual respect, and recognition that community knowledge is equally valuable alongside scientific expertise.

Long-Term Commitment

CBPR encourages relationships that extend beyond a single research project to support sustainable improvements in community health.

The Belmont principles remain the foundation for ethical review of CBPR. However, because CBPR focuses on partnerships with communities, investigators should consider both individual participants and the broader community when designing and conducting research.

Respect for Persons

Develop informed consent processes that are understandable, culturally appropriate, and responsive to the community.

Consider whether:

• Consent materials use language appropriate for the intended audience.
• The consent process allows adequate opportunity for discussion and questions.
• Community norms or social dynamics could unintentionally influence participation.

Beneficence

Evaluate both individual and community-level risks and benefits.

In addition to traditional research risks, consider whether the study could:

• Contribute to stigma or stereotyping
• Harm the reputation of the community
• Misrepresent community perspectives
• Produce unintended social or economic consequences

Plan strategies to minimize these risks while maximizing benefits to participants and the community.

Justice

Ensure participant selection is fair and equitable.

When developing your recruitment strategy, consider whether:

• Inclusion and exclusion criteria are scientifically justified.
• Recruitment methods avoid unfairly targeting or excluding groups.
• Community members will share in the benefits of the research.

Privacy and Confidentiality

Protecting privacy and confidentiality may be more complex in community settings than in traditional research.

Investigators should consider:

• Whether participants may be identifiable because of community characteristics rather than direct identifiers.
• Whether community partners have dual roles as both researchers and participants.
• How confidential information will be protected throughout the study.

Community Advisory Boards (CABs) can provide valuable guidance regarding culturally appropriate approaches to privacy, confidentiality, and communication.

Data Ownership and Sharing

CBPR often uses shared approaches to data ownership, access, interpretation, and dissemination.

Before beginning the study, investigators should establish clear expectations regarding:

• Who owns the data
• Who may access the data
• How data may be used
• How results will be interpreted
• How findings will be shared with the community and the broader scientific community

Whenever appropriate, these expectations should be documented through formal agreements.

When planning a CBPR study, consider whether you have:

✓ Engaged community partners early in study planning.

✓ Clearly defined the roles and responsibilities of researchers and community partners.

✓ Provided appropriate training and support for community partners involved in research activities.

✓ Developed recruitment and informed consent processes that are culturally appropriate and understandable.

✓ Considered both individual and community-level risks and benefits.

✓ Addressed privacy and confidentiality within the community setting.

✓ Established expectations for data ownership, access, and dissemination.

✓ Planned how research findings will be shared with the community.

✓ Considered how the research will provide meaningful benefit to the community.

If you are planning a Community-Based Participatory Research study and have questions about community engagement, recruitment, informed consent, or IRB review, contact OHSRP before submitting your protocol.

FDA Information Sheet: Recruiting Study Subjects