Engaging with a broad range of people as partners, advises Linda, should be the goal
Transcript
Patients get involved in different committees, because they’re all – there are many subcommittees, and I’m involved in the educational materials when that really interests me, and I know that I’ll have more to contribute there. But – and I don’t – again, as I said, I don’t know if there’s a fix for that, because I know that part of the funding structure requires patients to be part of this, but it may become a challenge depending on how these kind of projects are developed in the future, getting people who are working fulltime to commit to that kind of time commitment.
You want to always have, I think, a broad range of patients, young, old, men, women, working, retired, across the board. Because everybody has a different point of view, and you don’t want people participating to only come from certain groups of patients. So for funding agencies to not just, like okay, you have to have a patient on every committee, to say, well, could, you know, for this committee, could we look at this more realistically, because we want to be able to get people who are working full-time, who just finished treatment, for example, who are of a certain age range. Yeah, and so not making kind of a black and white, but looking at it more individually.
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- 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