Meaningful Involvement of People Living with HIV
The work of Terry Howard, Positive Living BC
It was while getting his feet wet in community-based research that Terry Howard realized he was going to have to significantly re-arrange the way he thought of how to go about it. "In consulting with a group of former prisoners living with HIV and drug use, I wanted to look at why some people so often spiralled in and out of jail," says Terry. "I wanted to pick their brains to find ways to halt this revolving door and provide support." Terry had the idea to train them as Peer Research Associates (PRAs), people who would conduct surveys on their peers to gather information. The participants were enthusiastic at first, but when it was explained to them that they could only conduct surveys and could not provide other information to participants (like services available for rehabilitation or housing), they resisted.
"They said to me 'We're not just going to do this research the way you tell us to'," explains Terry. "I really took a step back and realized I couldn't just go in there thinking it was going to be all my way. They were the experts, they knew what was needed. If I wanted access to their services, I had to play ball." So they reached a compromise. Terry gathered current information on support services available in the area and trained the participants, both as PRAs and as Health Ambassadors. They gathered important information from a population that is otherwise difficult to reach while providing information to their peers to help them access and navigate support services. Terry saw the benefits immediately "They became ambassadors in their community; people knew that the PRAs knew where to go for help and how to navigate the system. People started to seek them out. They got a lot of social capital, pride and confidence and some were able to quit drugs and leave the prison system," says Terry. "It gave me a taste of what research could be."
This experience continues to flavour Terry's work as the Director of HIV Community-based Research with Positive Living BC. Supported by CAHR, the Public Health Agency of Canada and CIHR, Terry is facilitating dialogue from PRA's from across Canada to be compiled into a recommendation of standards when working with PRAs. "We need to know what to provide for people when they are doing research work and how to accommodate differences in their work ability, their lifestyle and their health" Terry explains. The end goal is an online toolkit that can be used by anyone in a community organization or academia who is considering hiring PRAs for HIV research. "There are a lot of people now that are looking at using PRAs as part of their research but they don't necessarily understand what is involved," says Terry. "This toolkit will give them food for thought—ideas of the bare minimum of support they have to put in place and things to include when drawing up proposals."
Over the years, Terry has seen big changes in how community-based research is conducted, but he believes there is a great deal more to improve. "I want to see meaningful engagement with PRAs and people living with HIV in all aspects of research. Engaging them means you learn a lot more, whether you are on the academic side or on the community partner side," he says. "We can't just work with people and leave them in the dark, without results that they can access or understand. We have to be much better at taking the information and going back into communities to tell people why their involvement was important." Terry continues to work with community organizations, academics and PRAs in the HIV community to ensure that everyone's needs are understood. In the end, it makes for a more productive research project and a more ethical one too.
The Canadian Association for HIV Research (CAHR), the CIHR HIV/AIDS Research Initiative, the Canadian Foundation for AIDS Research (CANFAR), the CIHR Canadian HIV Trials Network (CTN) and the Canadian HIV Vaccine Initiative (CHVI) Research and Development Alliance Coordinating Office (ACO) would like to congratulate Terry Howard for his significant contributions to our understanding of the HIV epidemic. His work is part of a larger Canadian effort that is making a difference in the lives of those affected by HIV in Canada and around the world.
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