Written by Prof Irene Tuffrey-Wijne, Project Lead, Kingston University.

I had an AHA moment. It went like this.

We have a research advisory group for this project. The people in this group are our stakeholders. I’m still waiting for the AHA moment that gives me a better word than this obscure jargon, conjuring up images of farmers holding wooden poles, or butchers holding a juicy steak… The best I can do to explain it is: Any person, group or organisation that is interested in our study because it matters to them, or the topic is about them.

So for a study on involving people with learning disabilities in end of life care planning, the most important advisors are people with learning disabilities, followed by family carers. Then there are learning disability services, palliative care services, experts in end of life care planning, policy makers, commissioners, the Care Quality Commission, academics who know things I don’t… It’s a large and very diverse group. Our research advisory group has 27 members, three of whom have a learning disability.

The group meets a couple of times a year, but this month, I’ve been meeting with members individually. We’re coming towards the end of the project, so we wanted to take some time with each person to see how our study findings and our toolkit can benefit their organisation or their peers, and what we can do to reach them.

We have learned so much from each of these advisors, about the people they represent and the issues that matter to them. I couldn’t thank them enough for their generous contributions of time – many of these advisors are rather busy people. I was a bit taken aback when quite a few advisors said how much they, too, had benefited – and not just from learning about the topic, but from being part of such an inclusive group. We had to be a bit creative and run our meetings rather differently, because some of our advisors are not used to academic meetings. We didn’t want the meetings go over people’s heads or be intimidating, as that would in effect exclude them. So the meeting might look like this…

Have you ever heard of PPIE? Patient and Public Involvement and Engagement. Another bit of jargon. It’s when members of the public use their views and personal experiences to help prioritise, plan, deliver, evaluate and share health/social care research. That’s important (doing this study without people with learning disabilities would not just have been ridiculous, it would have been impossible). It’s not possible to get research funding without it, and quite rightly so. But lots of organisations and researchers struggle with it. How to enable “the public” to contribute, really contribute and not just sit there as a box to be ticked?

The AHA moment came when one of our advisors, who represents a national organisation, asked OUR advice on how they could get it right. The question was:

What training do you give your advisors with learning disabilities?

Well, I said, three out of our four co-researchers with learning disabilities did a research training course a few years ago. And we give them ad hoc training sessions about specific parts of the study, such as practicing for conducting focus groups.

Yes, that’s the researchers, but how about the research ADVISORS?  

I had a mild panic. Training? For our advisors? We haven’t given them any training! Oh dear… Should we have done?

Whilst saying Ehm… my mind quickly searched for the kind of training we might give our advisors with learning disabilities, or the family carers who are not used to meetings. That’s when it dawned on me.

My colleague Andrea, who was also in this meeting, must have done the same thing, as she put my AHA moment into words.

It’s not the people with learning disabilities who need training in being research advisors. It’s the rest of us. We, the researchers, who need to learn how to include people.

For each meeting, we have some very clear questions in mind that we need help with. It’s then up to us to find a way to make people understand the questions, understand why we are asking them, and feel relaxed enough to give us honest answers. Their job is to be themselves and contribute their views. Our job is to be very clear about why we need them.

I’ve been thinking more about this, and I truly cannot think of anything that our advisors would need training in. They should not have to fit into “our” meetings. In fact, you may need the advice from people who couldn’t possibly cope with standard meetings. You may need to find utterly creative ways of telling them about your project and gathering their views. If you only include advisors who can be trained to fit into YOUR meetings, then you may be excluding the very people whose views you need.

But if you do have everyone in the same meeting (like we did), then you need to make sure that everyone knows why they are there; everyone feels that they are just as important as those with fancy titles; no-one is intimidated by how important everyone else seems; and jargon is banned.

TOP TIP 1: Skip the lengthy introductions. You know the kind of thing – full of very fancy job titles and project roles you’re not quite sure you caught properly or indeed understand. Once you’ve gone round the room or the screen, you cannot for the life of you remember who everyone is, exactly (and you don’t dare ask later). Instead, we now give people a sheet with everyone’s photo on it, that says “What I know about”, like this:

TOP TIP 2: Make meetings fun! We try to do this, because it is a consistent message from people with learning disabilities: They like the (carefully planned) fun we have in our meetings. Perhaps unsurprisingly, we find that everyone else enjoys that too.

My only problem now is that most other meeting I go to, meetings WITHOUT people with learning disabilities, are just a bit… well… boring…