Patient Role in Research Design
I was recently asked about what role did I think that patients played in research design. I realize that I tend to think of patient design and develop in a very small content. Mostly with the patient as the then user but not part of the entire process.
Demystifying the study
I am still working through some of my thoughts on this. The question was prefaced that there are no wrong answers. I needed to think of this in a bit of a backward manner. There is a lot of data that many studies fail due to lack of participants and that patients are generally disengaged from the processes. However, when you look at this, is the context of "What can we do to close the gap" or what is the patient role. In my opinion, we need to start at getting more people involved. I know that some patients are fearful of the unknown and some studies do present a bit of risk or absence of information. Perhaps we need to start with demystifying the study. If you take a study consent which can often be a lengthy document and in some cases quite overwhelming. I believe that the patient voice is an important one in and starting with making research more approachable and increasing the number of participants.
What would make research more approachable to you? What would make your engagement easy? Would having more patient to patient support help? These are just a few of the questions that I have been pondering. I have some personal wishes in research. I do wish there was more patient engagement with each other as I think having other people going through the same experience is an incredibly valuable resource. Would it not be great to connect with other patients?
Last week while in the research center there was another patient in a different study also under observation at the same time. In this particular study, patients often cross paths but are seldom there together. I can't tell you how much I wanted to ask her zillion questions. I would have, except she was with her husband and they were off in a slightly different area and well, I did not want to seem creepy. I would have loved to know what study she was in, if she had a similar phenotype (subgroup) of asthma, what her thoughts on the study were, did she also dislike the lame questions (I know there are valuable assessments, however, there are often not clear or concise).
Access to research results
A hot topic right now is its access to research results. While many research studies have their results published. Patients seldom get results about their participation or what the results of the study were. I do think this will really improve the patient communications and for patients to feel valued as research partners and not just participants. There are excellent programs that are in development and have piloted the developing and offering summaries of trial findings to participant in the patient-friendly language in countries where regulations will allow it.1
Have you ever gotten "moon face" as a side effect of prednisone?