2021 Elderberries Study Requirements
On February 28, 2021, the ElderBerries met with a couple of professional researchers to discuss how to deal with the excessive number of studies we are being asked to participate in.
- The massive personal time commitment: we often get requests to participate in several studies per week.
- Requests for participation in studies of varying importance: for example, on Tuesday we might get a request from an undergrad student about determinants of health outcomes in elderly LGBT folk, the results of which will only be seen by her and her teacher. On Wednesday we might get an almost identical study from Health Canada, the results of which could change federal policy.
- The resulting "study fatigue" meaning that our communities don't participate in important ones.
- And there is a relatively mild annoyance of never hearing the results of these studies.
The team came up with a list of recommendations - and cautions.
What we can do
- We require every research request to be accompanied by a couple of paragraphs in lay language explaining “How will this study improve the lives of my group?” If they can’t write this, we can’t do the study. For students, the person is the thing, so they can submit a self-introduction.
- We require every research request to produce, at the end, a short report readable by the lay public, e.g. 500-800 words of the results, perhaps less for students. If they can’t do this, we can’t do the study.
- If possible, we be involved in the design of the study so the right questions are being asked.
- That we engage with national Q organizations such as EGALE, the LGBT Research Secretariat and Enchanté. We didn’t talk about exactly how we’d do this.
- We Q Elders have an Advisory Group which handles incoming requests for studies, surveys, interviews, and focus groups (it’s unlikely that the Elderberries will do this, though, we don’t have enough spare volunteer energy.)
What we can’t do
- We can not refuse to do studies on our population. Dr Gahagan said, "The research train has left the station and the Elderberries can either be driving the train from the pink engine... or be towed along in the lavender caboose.”
- Just to reiterate: we have to bite the bullet and do this work. We can’t refuse to do studies from undergrads, because that stifles their interest in our population, and if everyone did it, would prevent them from graduating.
- We can’t create a standard answers bank. No researcher in the world would use such a thing.
- We very often can’t interact with the questions, because either they’ve spent a very long time getting ethics approval, or because they’re a part of a standard e.g. international research instrument.