Elderberries Library: 2021-02-28 Meeting

An afternoon session talking about the epidemic of studies, surveys, interviews, and focus groups we’re being subjected to. The discussion was invited by Dr Jacqueline Gahagan, and we were joined by professional health researcher Dr Larry Mròz from Vancouver.

Members: Anita, Barend, Carolyn, Dan (notes) Lynn, Norval, Pauline, Norval PLEASE LET ME KNOW WHO ELSE WAS HERE.

Here are the two problems we’re faced with:

Problem 1: HUGE waste of time - we could easily spend an hour a day, every day, participating in these.

Problem 2: case study:

An undergrad student decides to (or is required to - e.g. all 125 medical students at the Dal School of Medicine are required to do one) do a research study for her term project. She picks “Determinants of 2SLGBTQ+ Seniors' Healthcare Outcomes” as her topic and makes up ten very reasonable questions.
She asks the Elderberries if they will participate; the Board says sure, we’re all about the advancement of science and helping students. * On Tuesday, we distribute the survey to members and they dutifully fill them out, and we never hear from her again.
On Thursday, Health Canada comes out with their official 2021 Q Elders Healthcare survey, which they’ve been developing for the last three years.
Not surprisingly it has almost all the same questions as the undergrad student’s.
Our members say, “I just did this survey two days ago” and don’t do it
Health Canada gets no information from Atlantic Canada or
Learns that there are just two lesbians living here and their outcomes are perfect and there are no unmet needs here.

We talked about this all afternoon.

Dr Mróz pointed out that it’s not just us; he works with indigenous groups who are being vastly overstudied as well and have precisely the same issues.

Our conclusions:

Recommendations:

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 do this, we can’t do the study.
We require every research request to produce, at the end, a report readable by the lay public, of 500-800 words of the results. 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.)

Non recommendations: what we can’t do:

We can not refuse to do studies on our population. As 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 re-iterate: 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 stop 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.