1 / 22

Engaging Community Health Workers in Research: Ethical Challenges and Practical Solutions

Engaging Community Health Workers in Research: Ethical Challenges and Practical Solutions. Camille Nebeker Graduate & Research Affairs San Diego State University Research Conference on Research Integrity Niagara Falls, NY May 15-17, 2009. Co-authors.

Download Presentation

Engaging Community Health Workers in Research: Ethical Challenges and Practical Solutions

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript


  1. Engaging Community Health Workers in Research: Ethical Challenges and Practical Solutions Camille Nebeker Graduate & Research Affairs San Diego State University Research Conference on Research Integrity Niagara Falls, NY May 15-17, 2009

  2. Co-authors • Karen Coleman, Ph.D, Program Evaluation • Jennifer Terpstra, MPH, Graduate Research Assistant, doctoral student • Gayle Simon, MPH, Resource Specialist

  3. Presentation Goals • Describe role of community health workers (CHW) in health promotion research • Address challenges and ethical concerns associated with this research approach • Discuss need for changing research practices and policy when working with CHWs

  4. Community Health Workers • Integral part of public health promotion in underserved communities. Involved in: • Participant identification • Subject recruitment • Informed Consent • Data collection

  5. Community Health Workers Advantages to research effectiveness • increased recruitment • participation • retention

  6. Protection of Human Subjects “…I have become increasingly aware of the challenges we face on our community-based studies that involve the Latino community and utilize promotoras… it would be a great resource for us to have culturally tailored, Spanish language training materials that emphasize the application of human subjects protections to field situations common to the promotoras.”

  7. Focus Groups – Project Managers/Principal Investigators • A series of six focus groups were convened with PM/PIs who have involved CHWs/promotores to deliver research.   • Participants described training needs specific to human subjects’ protections and challenges faced with training.

  8. Focus Groups with Promotores • Two focus groups were held with CHWs/promotores experienced in community based research and community service projects. • CHWs/promotores were asked to describe their responsibilities as research staff, their knowledge of research procedures and the challenges they faced as members of a research team.

  9. Research Challenges • Research Integrity • Participant Protections • Informed Consent • Voluntary Participation • Confidentiality • CHW Protection

  10. Research Integrity • Role in research vs role in the community • Pros and cons of “bridging the gap” • Implementing research protocol • Random assignment • Belief that research benefits participant • Need for training in basic research methods

  11. Participant Protections • Informed Consent • Lack of understanding of importance of process • Conflict with role in service project vs. research project • Voluntary Participation • Possible perceived obligation to participate due to CHWs role in the community • Pressure surrounding recruitment goals – may not convey risks • Confidentiality • Knowledge of community members • Social interactions

  12. CHW Protections • Participant Expectations • Complexity of research protocol • Conflict of commitment • Research Protocol • Provide assistance if believed needed

  13. Discussion • Traditional experimental design • Inappropriate for community-based research • Fundamental gap between research, practice and policy • Alternatives to traditional models • Adaptation for CHWs • Must fit with relationship to community • Community-centric approaches for interventions

  14. Recommendations - Training • Training for CHW • Project TRES • Ethical practices with human subjects • Intended to complement project specific training • Basic Research Concepts

  15. Basic Research Concepts

  16. TRES Topics • Roles/responsibilities of the research team • Research vs. service projects • Risks and benefits of research • Informed consent process (identification, recruitment and enrollment) • Confidentiality and privacy

  17. Web Training

  18. Roles & Responsibilities • Consider design that puts fewer demands on the CHW • Randomize neighborhoods rather than individuals • Evaluate CHWs role in recruitment and screening • Conflicts with no-treatment controls

  19. Cultural Sensitivity • Consent process must reflect community and culture • Family involvement • Interactions slower to develop • More time to consider involvement • Consent document • Flexibility • Language and terms

  20. Limitations • Focus groups were conducted to inform curricular development – not to gather information on challenges associated with the CHW model. • Important issues may be overlooked since specific questions were not included for this purpose. • Small sample size and limited qualitative analyses

  21. Acknowledgements • Project TRES (Training in Research Ethics and Standards) was funded by the National Institutes of Health (NHLBI). • Project TRES is the result of the significant contributions of the following individuals (in alphabetical order): • Karen Coleman, Program Evaluator • John Elder, Co-investigator • Michael Kalichman, Consulting Co-investigator, UCSD • Lori J. McNicholas, Curriculum Development • Camille Nebeker, Principal Investigator • Gayle Simon, Human Research Ethics Specialist • Greg Talavera, Co-investigator • Ana Talavera, Project Manager • Students Assistants: Carmen Violich, Gabriel Crosswaithe, Paulina Martinez, Izzybeth Rodriguez

  22. Thank you.

More Related