We spoke to three people about their experiences with community-based research partnerships:
- Shaun Hopkins, Manager of the Needle Exchange – The Works, Toronto Public Health
- Carrielynn Lund, Western Project Coordinator for CIET Canada
- Vicky Bungay, Assistant Professor, School of Nursing, University of British Columbia
Interviews by Debbie Koenig
Shaun Hopkins
Can you briefly tell me about your experience with community-based research partnerships and lessons learned? What were some of the benefits—both intended and unforeseen? And what were the main challenges?
When we have done community-based research at The Works, we’ve always involved the drug users who use our services. A lot of the research has either been aimed at evaluating the needle exchange services or identifying the needs of people who use them. Having the voices of the people who use services makes the work we do real and allows us to garner different viewpoints. We can find out, for example, how people feel and what can be done to improve their situations… All that information keeps the research grounded.
Involving community members in research can be challenging because they can have a hard time staying involved. If someone starts and then drops off for a while, what do you do in the meantime? You hold a spot for them and you try to make it OK for them to come and go. You may want to involve a couple of people instead of relying on just one person. This also helps with the challenge/problem of one person representing the diverse experiences of an entire group (for example, speaking on behalf of all women or all Aboriginal people…or representing people who smoke crack when the participant only uses opiates).
Another lesson learned is that if you don’t translate the results into programming or service delivery or design, then the work is all lost. You need to have resources and time and people who are willing to do that knowledge transfer. I think it’s important to involve people who use our services in the knowledge transfer because others are more likely to listen if it’s coming from people who are also affected by the issues raised. In terms of funders, if you can get people who use services to the table to talk about what needs to happen, you’re that much further ahead.
Marginalized communities often feel that they are the subject of research but not always the beneficiaries of it. For research projects you have worked on, what was the experience like for the communities involved? What steps were taken to ensure that the research was conducted in a way that was respectful of and beneficial to the individuals and communities involved?
We now realize that people who use our services need to be involved from the very beginning, so that they don’t feel like they’re a target or object. They need to be involved in designing the research questions, how the questions will be asked, where and by whom.
If you involve community members as interviewers, they may know the participants being interviewed. How do you ensure that you’re protecting the confidentiality of research participants? Does that disqualify people from that population [in our case, people who use drugs] from asking the questions? When discussing these issues, you need to have those community members at the table, you can’t have that discussion without them.
You can’t just throw people into a research project; if you do, you will be marginalizing them further. We [service providers and program planners] have the benefit of years of experience and education and translating all of that into something that makes sense for people can take time and energy, but it has to be done. It’s a matter of educating people.
I learned this recently with someone who has been helping me out with some national teleconferencing for a project. It can be very uncomfortable to be in a room with people you’ve never met before, especially if you’ve never been on a teleconference before. We put the phone on mute to go over where the other people on the call are, their areas of expertise, etc. You can’t skimp on that preparation that helps people to break down the barriers.
You have to involve people throughout the process. If you dump them at a certain point, of course they’re going to feel like they were used.
What other advice would you give to people who work in the world of HIV and/or hepatitis C prevention and are considering a research partnership?
If you want to involve people who use your services, ask them what the best way is to go about doing it. Hear what they have to say, then figure out what that could mean, and relate that back to them: “This is what you told us. This is what we think we might do…”
Sometimes people stop coming to the table because it can be hard to sit there for two hours. People who use drugs may need to get high, they may not feel comfortable, they may feel embarrassed about the clothes they’re wearing…it’s important to recognize all those factors and try to get them into the room in the right way. It’s about not making assumptions about people’s knowledge and trying to put yourself in their position. If you were walking into this room for the first time ever, how daunting would that be?
It’s also about how you talk to people. They have to be able to trust that you’re going to explain the research findings and translate them into services and programs.
Carrielynn Lund
Can you briefly describe your experience with community-based research partnerships and key lessons learned? (What were some of the benefits—both intended and unforeseen benefits? And what were the main challenges?)
I have been doing community-based research in partnership with community for 15 years. The most significant has been with CIET canada, a non-governmental organization (NGO) operating through the University of Ottawa. We have worked with Aboriginal communities to address community priorities, from a resilience perspective, which include youth suicide and HIV and other blood-borne viruses. Through training, we build the community’s capacity to do research. Community members are engaged at all levels and stages of the research: in developing the process (community ethical guidelines), developing the survey tool(s), collecting the data, entering the data, data analysis and, most importantly, communicating the findings (knowledge transfer).
The greatest challenge has been to establish a trusting relationship because of the historical way in which many researchers came and went with no benefit to the community and sometimes causing harm. It is also critical to establish community “readiness”—where the elected leaders and community members support the research being done. Having a person, or people, from the community with the time to be a part of the team is difficult as they are usually already employed full-time with demanding workloads.
Marginalized communities often feel that they are the subject of research but not always the beneficiaries of it. Thinking back to the research project(s) you have been a part of, what was the experience like for the community involved?
Communities have expressed their appreciation for the capacity building and support and for doing things in a way that honors their culture and beliefs.
What would your advice be to others who work in the world of HIV and/or hepatitis C prevention who are considering a research partnership?
HIV and hepatitis C are very sensitive topics to research in any community, but they are particularly sensitive among Aboriginal communities who do not normally discuss sex openly. All research and discussions should come from a positive perspective. Having community members, including a male and female elder, sit on your research team will help move things forward in an appropriate way. If research is to be done on-reserve or, in Alberta, on-settlement, you need to obtain the elected leaders’ approval before you begin. You will also need to determine who the community lead person is and how often you need to provide updates or reports to them.
Vicky Bungay
Can you briefly describe your experience with community-based research partnerships and key lessons learned? (What were some of the benefits—both intended and unforeseen benefits? And what were the main challenges?)
As a result of my experience doing community-based research, these are what I consider to be the key lessons learned: (a) Plan for the possibility that your research findings won’t be in keeping with the perspectives of the communities you’re working with. (b) Identify roles and responsibilities from the outset. (c) Be honest as a researcher about what is possible and feasible. (d) Work from the perspective that everybody has something to contribute.
I would say that the main challenges include: being able to ensure that the program is sustainable (see answer #3 below); trying to deal with budgetary restrictions; conflicts of interest among community members; ensuring participant confidentiality when doing collaborative data analysis; addressing power struggles among community members; and determining how to compensate research participants financially.
Marginalized communities often feel that they are the subject of research but not always the beneficiaries of it. Thinking back to the research project(s) you have been a part of, what was the experience like for the community involved? What steps were taken to ensure that the research was done in a way that was respectful of and beneficial to the individuals and communities involved?
This is a great question. In the projects that I have been involved with, I have seen that communities may have both positive and negative experiences. I think that how you establish the partnership at the outset, before you ever apply for funding or put together a proposal, is especially important. In research that was the most respectful and beneficial to the communities involved, I think that the key was that the research topic (for example, harm reduction and crack cocaine use) was identified by the community and not by the researchers. Also, throughout the project, the entire team viewed community benefits as a key aspect of the entire process. Benefits that were gained by the individuals and communities who participated include developing collaboration skills; an opportunity to inform interventions and be part of implementing interventions; and, in some instances, having a direct voice with policymakers.
What would your advice be to others who work in the world of HIV and/or hepatitis C prevention who are considering a research partnership?
Perhaps one of the greatest issues that researchers need to consider is sustainability. If, as a researcher, you are engaging in a community partnership to develop interventions that promote and protect people’s health, I think that you need to be attuned to how you see yourself in relation to sustaining a successful intervention. I believe that researchers have an ethical obligation to examine their commitment to sustainability prior to engaging in a community partnership. There are many ways to promote sustainability, such as involving from the outset of the project key stakeholders who have the ability to influence funding and the delivery of health services. Building, or maximizing, the capacity of a community can also help people sustain interventions and play a leadership role in the future. It is also valuable to consider the perspectives of community members regarding sustainability and their expectations for a project.
My other advice is that researchers and community members need to have a frank discussion about the benefits of research beyond building knowledge. In addition to building knowledge about the effectiveness of an intervention or informing policy, individual team members and the community more generally can potentially benefit in very real ways as the project is underway. I was once asked in a team meeting, “What will people get out of participating in this research project?” We had a great discussion about the benefits, which included community capacity-building (for example, expanding leadership capacities, expanding funding application capacities) and integrating existing but perhaps untapped health and social service resources into the activities of the community. I think that the community-based research or community-academic partnerships should build upon existing community capacities.