One of the interesting features about the grant that we received was that this was a “capacity-building fund.” Capacity building is really about acquiring resources – in this case knowledge, skills and networks – that give a person or organization the ability to do something new. In this case that ‘something’ is the ability to conduct community-based research (CBR).
I believe that having some basic understanding of research methods and process is important, because it empowers people to be able to evaluate incoming information. This goes hand in hand with scientific media literacy. In the information-age where we are absolutely inundated with information, including news about latest research findings, the ability to understand research methodology is an important skill. It helps prevent people from misunderstanding research findings or from being “taken” by false claims. But for organizations, the capacity to conduct community-based research is even greater than that - it creates the ability to learn more about the community’s needs and create closer connections and relationships with them. In fact, the research process itself can be a gateway to empowerment among the client population.
People living with HIV have been studied a lot! Bob has written about this before. Anyone who has been living with HIV for any length of time is no stranger to research. And the experience is not always a positive one. In fact, the traditional approach to research is reminiscent of colonialism: a research team enters a community, takes what they need, and leaves, without the community ever directly benefiting from the study.
CBR is a fairer approach to research. It recognizes that research should be a mutual exchange of knowledge, hence the emphasis on knowledge translation (making the findings accessible to people who may not be academics or experts in the field themselves) and exchange (understanding that both parties have something to share, which is different from knowledge dissemination - a unidirectional flow of information).
CBR also ensures that the community being studied is empowered to participate in the research process, in some ways perhaps even having the opportunity to participate in the research design and/or ownership of the data. Because CBR is intended to be inclusive of the community-being studied, it is, in a way, very similar to the principles behind GIPA, suggesting that the community should be involved in the research that potentially impacts their lives.
Understanding and employing these features has been a wonderful experience and, I believe, an excellent learning process for us at ACG. It has allowed us to execute many of the principles we aim to employ in other areas of the organization to a new goal and process. I believe it has also been a positive experience for our research participants.
Another feature worth mentioning is our experience in having a Peer Research Assistant (someone living with HIV) work on the project. Our peer research assistant, as part of our Working Group, conducted many of the interviews. However, he wasn’t just an interviewer. He helped with the research & methodology design and contributed in many ways, making sure that the interview schedule captured or addressed key issues. He urged us to address issues related to HIV beyond the disease, remembering the impact of trauma and other life experiences, and the way they intercepted with HIV.
He was not the only person living with HIV involved in the research, but I believe that his relationships with ACG clients allowed the study to gain credibility among our client population. Having a peer research assistant who is well connected and respected in the community provided a gateway to having participants trust in the process and open up about incredibly intimate issues. Peer research assistants have to maintain clear boundaries and professionalism while executing research with their peers, but this is clearly possible for people with skills and experience in this regard. Organizations should not write off the possibility of utilizing peer research assistants because of fear of boundary issues. Our peer research assistant provided an invaluable contribution to the project.
No doubt, I have learned just as much about community-based research as I actually have about the subject of the research itself. From writing a research grant proposal to presenting research in lay language, we have built a great deal of capacity in our organization, gained many skills and strengthened bonds as team members. Our peer research assistant was hired and now works at the agency part-time. I am sitting on a committee to develop another community-based research study under the wing of anther organization. And the project continues to be a learning process, as we move forward with knowledge translation & exchange activities.