Involvement means participation: Community engagement in research

We take another close look: What needs to be considered in community involvement in research? A non-exhaustive list from the presentation by Veriano De Souza Terto Junior from the Brazilian Interdisciplinary AIDS Association:

• Adherence to ethical research standards for all participants:must be followed.
• Community participation must take place in all the different phases of research: From planning to implementation to evaluation.
• Research protocols must be fully accessible and available to both participants and the community (transparency).
• It must be ensured that risks and harm are avoided when conducting the research (keywords: reinforcement of stigmatization, prejudice and discrimination).Participation must be representative of the voices and demands of the communities and, for example, take diversity into account in relation to LGBTIQ+.
• The reasons for conducting a study must be clearly explained and it must be ensured that any potential benefits from the study benefit the participating community.

The following challenges are reported in the context of community involvement:

• Maintaining the highest ethical standards regardless of gender identity, religion, sexual orientation, origin, etc. of groups involved
• Ensuring autonomy and avoiding conflicts of interest in community organizations, especially with increasing funding from pharmaceutical companies
• Participation of trans and non-binary people, lesbians and other interest groups
• Demonstrating the advantages and benefits for the community as well as researchers
• Ensure genuine, open, "democratic" participation