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User led research meets traditional research: lessons to learn

11 July 2023

This is the fifth in a series of blogs by Peter Beresford about a research project which Shaping Our Lives has carried out jointly with King’s College London. You can also read a report we have written about the project, Match Making In Research

I’ve always thought a key reason why we got funding for this project was because it connected with something seen as important, that is Elinor Ostrom and her principles for collaborative group working and the collective management of resources  (natural and other).

Now I’m not saying she hadn’t got something helpful to say and of course unlike you or me(!!) she got a Nobel prize, so she is seen as up there with the giants.

Together we wanted over the 16 months’ course of the research to investigate new ways of partnership working between researchers, Disabled people and health and social care organisations. Our Big Lottery Inclusive Involvement Movement project group could offer a potentially innovative case study to apply Ostrom’s principles. For more detail on the research project, see our Research Report.

But in my opinion at least, far more important than exploring user-led work in relation to Ostrom’s principles as was intended, is to develop the analysis of the new self-research pioneered by a wide range of people from feminists, environmentalists, disabled people and the LBGTQ+ community. This has been an unbelievably ground-breaking development, rethinking the purpose, nature, aims, relationships and role of research and highlighting diverse kinds and sources of knowledge.  

I don’t think the mainstream research world yet sees disabled people’s or service users’ research as important in its own right, or at least not as important as it needs to be. So, our route in effect had to be to attach ourselves to an historic researcher. At the end of the day, I don’t think we learned much new from her. And really in my view this is looking through the wrong end of the telescope. Mainstream research needs to be looking to us for new ideas, methods and methodology, not the other way round.

But I guess this is how processes of change work; often too slowly for the innovators, but projects like King’s College London and ours do signify and help legitimate such change.

We truly all are different – don’t forget that!

We should also remember that there are not only differences of opinion between academics and service users, but also that as service users, we may not all be coming from the same place and we need to recognize and think through any differences in our viewpoints. The aim should not be to force people into some artificial consensus, but to surface and explore competing understandings and opinions. This is another way in which we can all learn and achieve better results as well. We won’t all start from the same point of view and we need to remember this. In our report of the research project we talked about ‘making sure that everyone is on the bus’. This is a helpful down to earth way of making sure we don’t forget this important issue and allow time for everyone to catch up and get on that bus!

We learned it was important to clarify our different roles in the research project. For example, as a user-led organization, we would not expect a university to influence how we proceeded with our organisation, although insights that could be offered through the research could be helpful. But it is hardly surprising that confusions and ambiguities like this cropped up during the project, for all our mutual goodwill. We were all entering uncharted territory. We didn’t have much history to learn from! That’s something we need to build, and that’s what comes next.