By Pedro Goicochea, MSc, MA, Former Co-investigator, HPTN 039, Asociacion Civil Impacta Salud y Educacion, Peru
When we started to produce items for the different communities we were working with at Impacta Peru, a non-profit HIV research organization, all educational materials were submitted for review and approval from our ethics committee.
However, during one of our monthly meetings with the Community Advisory Board (CAB), CAB members raised concerns and asked the investigators to consider their input on the kinds of materials that were produced, as well as the content—especially with regard to terminology and use of jargon.
To be responsive, our research team decided to share the materials for review—not for approval—with the CAB after they were approved by the ethics committee. The CAB viewed this gesture as “rubber stamping,” because no modifications could be made after the materials had already been approved by the ethics committee.
We then decided to adopt a more participatory process for the production of any material developed for potential or current study participants.
The process now follows these key steps:
- Conceive and write the contents.
- Validate contents with the study’s staff members.
- Design the graphics and the layout.
- Pre-test the materials in focus group discussions.
- Adjust the materials in response to the pre-test.
- Revise the design and layout.
- Conduct a second pre-test.
- Submit materials to the CAB. Explain to the CAB that the materials have been pre-tested with the different communities and brief them on the process.
- Incorporate CAB comments into a final version.
- Submit materials to the ethics committee for approval.
- Produce the final versions.
- Distribute the materials based on a plan that includes training the staff members who will use the material, such as counselors, outreach workers, and physicians.