This is an experiment. If we post research questions and ideas, would you folks out there, the public, think about them, comment and help us shape our work? Well, let’s give it a go shall we? The first question is about this very thing and it’s on its own page, where it will stay because it’s over-arching.
New questions will be posted here so the comments can follow on in order. And if you have ideas for mental health and learning disability research you think should get some attention, why not tell us? All your comments will be read and, unless they are offensive or off-topic, they’ll stay on the site.
Dr Suzanne Conboy-Hill 
So where is the info about ethics consent? Personally I don’t take part in any research with out seeing evidence of this first. What will you do with the data?
Just a couple of questions to start off.
Good points. Let’s be clear then, this isn’t research, it’s asking members of the public what they think about ideas that might become research. We always have to do that and the process helps us think through research questions and methods by bringing in new perspectives. It doesn’t go to an ethics panel because there is no intervention and the data are not going to be processed in any formal way. We often struggle to get genuine public opinion and can end up going back to the same people all the time. We wondered if putting some of our questions on an open blog – where the comments would also be open – would widen our scope.
Thank you for kicking this off, I hope I’ve cleared things up a bit and maybe you’ll come back again when we have other questions.
Hi Suzanne,
You’re right about not having to go through ethics committee for involvement on research design etc but it does raise all kinds of questions about the ethics of involvement-one way round is to obtain informed consent in consultation too and make people aware they can leave the process at any point ( and yes I know you have some interesting thoughts about this!). Not sure how to do this in virtual consultation though-thoughts..?
Fab presentation yesterday -we were definitely awake! The LEAF members in the involvement seminar were especially inspired by your model of speculative and practical research and have asked it to be integrated into our terms of reference so that the group becomes ideas generating too
Here’s one for you collection
http://www.vectorsjournal.org/
Cheers Ruth
It’s fascinating, isn’t it? I often find myself in clinical practice assessing people for capacity to consent to an interview about capacity to consent so where do you actually start? Sometimes it seems to be as much about making the engagement as meaningful, non-aversive, and explicitly voluntary as possible although, of course, it’s never easy to to judge someone else’s perceptions of those things.
At least online there is no prior relationship to compromise someone’s involvement and no requirement to access the web page let alone leave a comment so it has to be about as free as it gets. Comments can also be removed if someone wanted that to happen so there is probably more public control than in most other settings.
I’m still intrigued though at the lack of involvement (so far) when people seem quite happy to comment on everything from politicians’ dress sense to videos about baby sloths! Maybe it’s just not interesting enough – and that’s an issue in itself I suspect.
As to the conference, what can I say except many thanks for your kind comments! I’m really pleased about the LEAF intention to look at the different categories of research. Like writers, researchers seem to have preferences for ‘genre’ if you like and the ones who go for Sci Fi are not likely to be happy writing historical romance based on Cromwellian diaries so there wouldn’t be much point in trying to force them into it. There are funding streams that cater for pretty much all types, so long as the idea isn’t too left field, which means we can keep an eye open for the macro to the micro – much more exciting!
Hi Suzanne, I agree the genre thing and about having a range of research styles, LEAF suggested in house guidelines for involvement and I was resistant for this very reason. Some shared principles maybe but no one size fits all.
Maybe people need a concrete idea to hang initial conversation around?
Cheers Ruth
NB. My point about ethics and involvement I think applies in face to face meetings but I think you’re right about knowing where to draw the line.
I agree. Pinning things down too firmly might mean there’s insufficient flexibility for the process to fulfill its function. If you squeeze too hard, you loose the life in it and risk the impetus going elsewhere.
PS Looked at the vectors journal site. Will have to go back and try it again when awake. That’s one funky outfit!