I’ve attended a few webinars lately where I’ve taken some notes during the session with the intention of posting them here on my blog, and then not quite gotten around to adding in the links I wanted to and actually posting them. But I’ve decided to correct that! Here’s the first of a few postings like this.
Perception vs. Reality in HIV Community-Based Research (CBR)
webinar held by: SFU Faculty of Health Sciences
date: 6 February 2014
presenter: Terry Howard, MSc, PPH
- CBR ” a form of research in which principles of community involvement and collaboration are applied using scientifically accepted research methods”
- CIHR defintion: “Community-based research (CBR) is a collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings. CBR begins with a research topic of importance to the community with the aim of combining knowledge and action for social change to improve community health and eliminate health disparities. CBR brings researchers together with members of the community to: identify the issues; collect, analyze and interpret the data; and decide how to use the results to inform policy, change practice and improve conditions in the community.”
- engage communities at *all* stages of research (i.e., from the creation of the research question through to disseminating research results)
- often, community-based research is often considered “anecdotal”, but doesn’t take into account the different ways of gathering evidence that isn’t the same as the “scientific” framework
Community-engaged research continuum
- investigator-driven research – less community involvement
- investigator comes to community with a research question
- community-placed research
- community-based research
- community-based participatory research
- community-driven research – complete community involvement
- community comes up with question, writes grant application, etc.
Theory vs. Practice
- often not practical for community members to write a grant application, which is going to be reviewed by researchers who will expect a certain way of writing, certain language, etc.
- CIHR requirements to become “qualified” to hold funds is quite onerous for a community agency – so often the institution holds the funds, though it requires a good relationship, clear roles/responsibilities, clear expectation of all the partners so that the community agency can trust that it will get control of funds that it needs to do the work
- make use of the talents of both sides (academics have strengths in grant writing, academic institutions can hold research funds, community brings relevancy and participation)
- there needs to be something in it for the community – if there’s no benefit to them, why would they be involved?
- data control is an important issue – who owns & controls the data and how results are communicated
- power dynamics – especially when there is one community member on a committee with many academics – need to work to even the playing field
- “community-based research is messy” – things don’t go as smoothly or as per the proposed timeline
- dissemination – academics tend to want to publish, community members tend to want to present and use findings for the benefit of the community – each side needs to see the value of the different ways of disseminating
- budget to include community members as researchers
- GIPA = greater involvement of people with living HIV/AIDS
- MEPA = meaningful engagement of people living with HIV/AIDS
- in response to “drive by researchers” – people who came and asked questions/collected data on a community and then left without providing anything for the community
- “nothing about us without us”
- used to be more about having a token community member on a committee who they would update once in a while; now moved to where community members are more meaningfully engaged (e.g., community coming up with research questions, community members trained to conducted the research)
- there should be benefits to both sides of the partnership
- can be useful to do process evaluation along the way – e.g., community members keep ethnographic notes and tell researchers how things are going
