Tips for the future
2 August 2023
inclusioninvolvementResearchThis is the seventh 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.
In the Shaping Our lives report on the research project, we offer many tips for taking forward such equal collaborative research projects forward for the future. They seem really helpful and they build on the body of experience that this partnership offered us. But – and it can be a big but – they are easier said than done at present. Much more needs to be happening at a more structural level, to include service user research and researchers, in all their diversity, on equal terms. We need our allies in universities and research organisations to join us in pressing hard for this. But these are lean times in public policy, services and organisations, with many years now of unremitting cuts.
I doubt we will see the true contribution for full user involvement and partnership in research until our present national formal politics change and move on from small state neoliberalism, to a more truly mixed economy and rights-led and sustainable society. These are big changes but partnership research like that we are discussing here can have a helpful role in making this happen, rather than just being seen as a victim of present market-driven ideology.
Access and the pandemic
Because of the pandemic, the project was carried out remotely. This can be seen as having strengths and weaknesses. Certainly, from my point of view, for example, the absence of travel, made things easier. But we should not assume that the same is true for everyone. There are both gains and losses from working remotely as there are, particularly for many disabled people with access needs, with face to face working. So far there is little sign that this big lesson is being learned and that ways of research working are including the strengths of each working style, rather than perpetuating the barriers associated with each.
The importance of trust; the centrality of building relationships
We were lucky in our relationship with academics from King’s College London. There seemed to be a preparedness to listen and learn from us and a respect that provided a real starting point for building trust and relationships in our work together. User involvement in research and participatory research receive a lot of positive rhetoric, but too often the reality is much more stressful and difficult, with tokenism a routine and regular concern of user led organisations like Shaping Our Lives. There was trust between the two parties in this arrangement, but then we all worked hard to make it possible and when there were problems or misunderstandings, tried to sort them out. No one is saying it is easy, but it is possible and as this happens more often and more routinely, so hopefully it will become more straightforward for all of us.
Meanwhile if there’s one saying that stayed helpful during this experience, for me at least, it was articulate the issue. If you have a worry, something isn’t going as it should be, or there seem to be unstated differences, say so. Don’t leave misunderstandings or differences of opinion to fester and cause real damage. Open, accessible, regular communication is at the heart of sorting this. Shaping Our Lives estimated it took a year to build up the trust and working practices that worked for everyone.
We hope that our experience will help many others, both academic researchers and service user researchers. We also hope that increasingly there will emerge a body of researchers, blessed with both sets of skill and experience. They will be a powerhouse for more inclusive and participatory research and knowledge development. That’s one of my real hopes for the future. Goodbye for now – or at least goodbye until the next time.