Linda is self-employed as a writer and editor – primarily in the health communications and medical advertising fields – who has been invited to be a patient collaborator on a number of research projects over the past eight years. Linda was very interested to become involved, wanting to contribute in some way after receiving wonderful care during her treatment. She enjoyed learning about the research being conducted and getting to see the bigger picture, and not only the patient perspective. As a patient partner she has seen that this kind of research can result in improvements for patients. Linda feels that researchers who work hard to connect to patients advisors, such as getting to know them better as people and not only patients, help make new participants feel at ease and contribute to the overall effectiveness of the collaboration. She believes that it is really important to provide patient collaborators with clear expectations of their role in a project, so that they can evaluate whether or not a project is of interest to them and for them to contribute effectively. Overall, she has had very good experiences and feels that researchers were always very approachable. Linda is interested in the possibility of getting more involved in research to build on her experiences and apply her professional skills.
- Learning From Others – LindaLinda thinks about the experience of having cancer in a different way than she did before
- Challenging Experiences – LindaLinda felt left out of a conversation with researchers during a large national meeting
- Supports needed – LindaProjects move forward more constructively, according to Linda, when patients receive coaching to help them understand their role and expectations.
- Diversity – LindaEngaging with a broad range of people as partners, advises Linda, should be the goal
- Balancing time and commitments – LindaLinda was frustrated when her engagement obligations interfered with work deadlines
- Valuing contributions – LindaEven though Linda doesn’t expect compensation, she feels patients should be compensated in longer-term projects
- Relationship building – LindaWhere Linda had pleasant interactions with researchers, this led to positive partnership experiences
- Motivations – LindaFor personal and practical reasons, Linda has decided that she may not continue as a patient partner