Green and Mercer4
defined community-based participatory research
(CBPR) as “a systematic inquiry, with the collaboration of those affected by the issue being studied, for purposes of education and taking action or effecting change.”4[p.1957]
Community-based participatory research could reduce colorectal cancer screening disparities by emphasizing partnerships between investigators and community members in planning, implementation, evaluation, and dissemination of research findings. Theoretically, application of such an approach increases the likelihood that research findings will be readily implemented in communities because communities are invested in the research process.5
Community-based participatory research can be viewed as resting on two pillars: ethics and community empowerment.6
The former is a pillar because meaningful community participation in the research process will help protect communities from exploitation and unethical behavior on the part of researchers. The latter is a pillar because CBPR can offer a transfer of power from institutions that historically hold it (academia and public agencies) to those who have been denied it (low-income and minority communities). In this paper we hope to demonstrate how community health workers have contributed to the ethical pillar, but will refer to their contribution to the empowerment pillar as well.
The ethical pillar of CBPR encompasses the fundamental ethical principles of autonomy, justice, and beneficence.7
These principles frame an obligation to protect communities as well as individuals from harm. Community-based research violates the principle of autonomy and may violate the others if it is conducted without active community input. Community health workers (CHWs)—also known as community health advisors, natural helpers, and frontline workers—can help provide that input, although they should not bear sole responsibility for carrying out this function.
The World Health Organization (WHO) defines community health workers as individuals who should be members of the communities where they work, should be selected by the communities, should be answerable to the communities for their activities, should be supported by the health system but not necessarily a part of its organization, and have shorter training than professional workers
In conducting CBPR, an important issue is identifying authentic and legitimate community representatives.6
The WHO definition makes it clear that CHWs serving in a CBPR project may be among those most qualified to represent the views of the community on important health issues and are well-positioned to recognize lapses in research ethics if and when they occur.
Community health workers are now widely used in both research and public health practice involving minority groups.9–11
Inclusion of CHWs in these programs offers several benefits. For community members, it represents an employment opportunity and a chance to develop useful skills. For investigators, deploying CHWs enhances access to targeted populations and promotes research participation. For research participants, CHWs represent cultural competence in explaining the project and obtaining meaningful informed consent.12
Finally, for communities, CHWs represent increased capacity for community development.
Community health educators (CHEs) also play an important role in CBPR as well as public health practice. For the purposes of this project, we identified agency (e.g., public health department) representatives and research staff with graduate degrees in a health profession (e.g., health professionals) as CHEs and community members not previously trained as health professionals as CHWs. Community health educators often serve in a role similar to that of CHWs but may not be members of the community in which they serve, have received most of their training in school rather than on the job, and tend to be regarded by the community as well as by peers as belonging to a different class of health worker.
Several commentators have developed sets of principles to guide CBPR. They include Israel et al. (nine principles),13
Green et al. (a 23-item checklist),14
Viswanathan et al. for the Agency for Healthcare Research and Quality (11 “critical elements”),15
In the present analysis, we consider four principles that are particularly relevant to ethical considerations: community engagement
, mutual learning
, and commitment to sustainability