Whose experience is most valuable?

I’d like to suggest that to ensure we get the most out of involvement, we need to involve people with direct experience of whatever condition is being studied. If you’re studying substance misuse amongst homeless people, you need to talk to people who’ve had that exact experience – it’s not that any mental health service user will do…

I’m basing this conclusion on a recent evaluation of the work of the FAST-R panel – a panel of mental health service users and carers who review patient information sheets, protocols and questionnaires for mental health researchers. (A journal article about the evaluation has just been published).The evaluation involved reading every single comment the Panel had made on 85 studies over a period of three years.

Their comments fell into three different categories. The first category included comments about making the information clear and easy to understand. They were all about rewriting the documents in plain English and changing the format. Any lay person might have done this – others might even argue that a science journalist could do it!

The second category included comments that I’m going to call general patient/ carer comments. These related to issues that many patients would know about – for example, checking that researchers had enough money in their travel budget for participants to take taxis when needed. In this particular example, Panel members also reminded researchers of the need to be sensitive to service users’ concerns about stigma and discrimination – issues that your average member of the public might not have picked up, but ones that people with a range of mental health problems would know about.

The third and final category included what I’m going to call patient/ carer expert comments. These were comments that were based on the unique insights of people with experience of a specific health problem. One example came from a review of a study of brain activity in people with schizophrenia. The information sheet explained that music would be played while people were in the MRI scanner. One of the Panel members with schizophrenia commented that if he were experiencing paranoia, he’d need to know exactly which piece of music was going to be played ahead of time.

So I’m concluding from this evaluation that if you want comments at all three levels you need to involve people with the right kind of experiential knowledge. Is this happening? I’m not sure. I’ve noticed that lots of panels and groups are being set up to support involvement across a wide range of research studies, and I’m wondering if sufficient attention is paid to matching people’s experience to the projects they’re asked to comment on.

Some people might say this doesn’t matter. If such panels are making the information clearer and participation in research easier, then that’s already a great improvement on what’s gone before. But I think those patient/ carer expert insights, are like the icing on the cake, the detail that might make all the difference.

Understanding the differences between these contributions I suggest is crucial to understanding the purpose of involvement. It’s not only about making research lay-friendly – it’s about making research relevant and acceptable to specific groups of patients. We may need to think more carefully about whose experiential knowledge is going to be most valuable in any particular study – so we can be sure to involve the people who have the most relevant experience.