Yesterday I took part in a zoom call with 4 other stroke survivors. It took the form of the SA giving an overview of the work they are doing to come up with their next 5 year research plan. The moderator posed a series of questions and each of us in turn were able to give feedback. None of the other 4 survivors, who were well known to the SA, seem to have had any idea in the slightest that the the SA had a forum. I came away thinking what a waste. The 4 would definitely have enhanced the forum by sharing information.
There were 2 groups, I think the other group might have had carers as well as survivors. No summary outcomes were shared between the two groups.
There was a mindset I felt that some of the 4 only thought of this in terms of paid research by the SA, not so much how the SA could link up researchers with survivors to validate ideas or where universities might find themselves. One lady on the call was very interesting in terms of her understanding of research and researchers. She didn’t have a high opinion of them. Often little meaningful progress and many rehashes of previous work. Seemed as though some might make a nice living going from one to another and achieve, ahem, **** all.
I suspect I was alone in my thought that the SA doesn’t help here by not going out to the research community. It seems to sit and wait for researchers to contact them against the 20 wooly research priorities. It should shop imo.
Why they don’t try, our stroke community have highlighted this consistent issue, research community, we want x,y,z elements, identified and explained by this date, at this cost.
Or
Our survey of survivors has revealed care in the 3 months following a stroke varies significantly and possibly by postcode. Identify best care practices with supporting data and rate each region against this criteria. Highlight those regions who fail significantly including explanations as to why this is the case.
When I mentioned the forum and that there was a research section that the SA had shut down, I was expecting some sort of reaction. Something like, really, that’s not right at all, that sounds perfect, how did it work ? but got none at all. Zilch.
There were 5 points where I was thinking, forum, forum ! , FORUM, oh come on please.
- there was an absence of new younger people coming through into the research review teams.
- there was no way to easily find out about research and how to volunteer
- there wasnt a simple way for researchers to reach stroke survivors.
- email was used to contact survivors, can’t remember exactly why but I think it was to find volunteers.
- and wait for it, I may be paraphrasing but it was something like absence of stroke information and peer to peer support. One of the 4 had attended hospital on one day and his support after was zero.
I wondered whether the SA will just naturally die out unless it adapts. It clearly has no digital strategy and doesn’t seem to have any understanding of what it has or could have with the forum.
One participant mentioned how hard it was to get to meetings in other locations, the irony really of how we were all on a zoom call.
I am not sure what difference the meeting will make, they didn’t examine in the meeting what had and hadn’t worked well with the last 5 year plan.
One obvious weakness is the SA have 20 items in their plan. Almost all are quite wooly, no timescales, priority within those 20, definite bias towards medical staff rather than survivors imo and some are just unrealistic. Worthy but not surely something to fund research on.
I left really shaking my head. I was the youngest survivor by a fair few years. It’s as though everyone who works for the SA or deals with them regularly end up having the same non digital mindset.
Forum !!!! Not location dependant, one point of contact, one post to many relationship, target audience, filter the requests before adding.