On Tuesday I attended a great session convened by Kathy Boxall and Peter Beresford called "How can users be effectively and inclusively involved in health and social care research"? There were three presenters- rather than precis the whole of what they said- I'll just share with you the gems and take home messages that I wrote down while listening to them:
Alison Faulkner- independent mental health service user and consulant:
Jennifer Taylor & Maggie Brennan, co-authors of "We are not Stupid" and members of People First Lambeth (an self-advocacy group for people with learning disabilities)
User-led research will involve difference distress and dissent- Let's not pretend that it doesn't. e.g We can't expect people with distressing experiences not to bring that distress into the project. We need to find ways of negotiating disagreement.
In response to a question about how to ensure that service users were "representative" Alison responded that representation is about making it possible for everyone to take part in research that wants to.
Even with the good support workers, we only have a say up to the point where they disagree with usVic Forrest- support worker
It's hard not to take control- even when you are really trying not to. I found I needed strategies for watching how I was feeling.Roger Steel, PP Manager, UK Clinical Research Network
Relationships between researchers and service users become more difficult the more marginalised the service users are.
It's not about revolution, its about evolution. Large scale change in society attitudes is going to be slow.Peter Beresford
We do need to think about how we support ourselves and each other in this endeavour.The best gem was the "We are not stupid" book that I bought from Jennifer and Maggie at the end of the session. It's a great example of an accessible book, but the contents also give testament to a great example of user-led (emancipatory) research. They write:
"We wanted to look into the things we cared about the most and write about them in our book. What we cared about was what was happening in the lives of people with learning difficulties".For information on how to buy a copy of the book you can go to this website: http://www.shapingourlives.org.uk/ourpubs.html#wans
So what will I take away from this session?
- Some great ideas for approaching the book that I am editing with Melanine Nind on "Concepts of Access", where three different self-advocates or advocay groups are contributing chapters in which they share their experiences of "access" issues. See my other blog here for more details: http://conceptsofaccess.blogspot.com/2008/03/concepts-of-access-publications-in.html
- Some questions to ponder.. like is the best home for participatory research really universities? Are university researchers part of the problem or part of the solution? For many university researchers the reasons for doing research seem warped- its about funding, promotion, publications etc.and not about making a difference in the lives of the people they are researching. Now of course, I have no evidence to back this claim up, and in some ways I'm being deliberately provocative. But, the flip side of the coin is that the skills required to be an effective participatory researcher are supremely underestimated and undervalued (Jan Walmsley writes very well on this subject).
So where is the revolution then? Well, the revolution for me was in the two articulate presenters Jennfier and Maggie who spoke clearly and confidently to an audience of academics but who also insisted in a professional yet assertive manner that we as academics spoke in plain English, without any jargon. Some of the audience found this very hard to do! Research methods I guess are not just about collecting and analysing data, it is also about communicating and disseminating.