Carol has been involved in research since her diagnosis with HIV in 1988. She was pregnant at the time, and agreed to be part of a research study as a participant to test HIV medication. Ever since that moment, she has been an active research participant and partner in various roles and research approaches. She described some of the personal benefits that she has gained through her participation in research, including learning more about her illness and the opportunity to offer something back to research based on her illness experiences. She feels most comfortable joining in on projects where she can trust her research collaborators and be part of ‘closed’ groups, working closely with researchers but not as public sessions. She is currently part of a diverse group of about 10 patients who provide advice to researchers at a provincial level. Carol described how the research coordinator for one study that she was involved in was able to create a very positive atmosphere where people feel respected, appreciated and acknowledged. She feels that his excellent facilitation skills and sincere attitude have contributed to the creation and continuation of this advisory group. Carol feels that research findings need to be communicated better and disseminated faster.
- Improving Patient Care and Experiences – CarolCarol learned that sharing her personal experience with illness is valuable information for researchers
- Impact on Research – CarolCarol helped revise language in a research survey to ensure that patients would not feel judged in how they answered the questions.
- Defining partnerships – CarolPatient partner terminology all has the same meaning, according to Carol
- Advice to others – CarolCarol encourages researchers to be relaxed, honest and empathetic
- Valuing contributions – CarolCarol benefits from being able to provide information that can support people who need it