"The value of lived experience in media, policy, and research is fundamentally shifting, and that's exciting."

Description

What counts as a 'meaningful' engagement when involving patients and public with research? How can we elevate the voices of people with lived experience as experts? How can we support those people who agree to tell their own stories for impact?

In this episode Peter is joined by Nick Hillier, Director of Communications and Engagement at the Academy of Medical Sciences, which was established in 1998 to ensure that everybody can access good health, supported by the best research and evidence.

Conversation

The below excerpt has been heavily condensed and edited from the original for the sake of brevity.

Peter: What is especially complex about trying to increase the diversity of voices in research communications?

NH: Finding people and getting to know people is one area of complexity. Maybe one of the differences is that academic expert voices are paid as part of their job. as comms professionals, you're used to working with other people, mostly in a professional capacity. But the whole field of involvement is about the feels, it's about people's experiences, it's about people's stories. It's about providing them an opportunity to share their story, but also to have impact with their story. There is an emotional load of sharing your life experience and it's really important that we look after people who are doing that and only put them on a platform where they feel they're going to get something out of it. It's not a goldfish bowl, we're not just saying, “We need someone with condition X, Y, or Z to get them on the sofa.

 So there's that whole complexity there, which is actually the bit that I enjoy the most because it's about building deeper relationships with people, really understanding where people are coming from, where their passion lies and why they want to make this difference, why they want to say this.

How do you overcome these challenges in supporting people with lived experience?

We have programs that we are currently piloting to bring more lived experience voices, patient carer voices into the world that we work in. Very often the voices that we might hear from are going to be people who are financially secure enough to be able to do that, or who have connections and are able to say, 'Oh yeah, I know that person who can link me to this project.'

We recruit people through traditional market research mechanisms. We just ask, 'are you taking any medications and have you had an interaction with a healthcare professional in the last six weeks?' Someone says, 'yeah, I've got three tablets I take each day and I was in the hospital last week' – you can tell they're going to have lived experience to share, but we're not saying 'we want you because you've got this condition or that condition.'

We take them on a training program – six months, one session a month, some in person, some online. We ask, 'What skills do you want that would help you tell your story?' We do a lot on storytelling, not just developing your story, but what you want to do with it, how you want to have impact with it, what you want to change. Hopefully this gives them enough so that the next time someone says, 'would you like to be involved in this?' they're like, 'yeah, my voice matters. My story is important. I'm going to tell it because I want it to make a difference in this way or that way.

What’s one piece of advice you’ve been given in your career that you keep coming back to?

I think it's probably the comms basic of ‘what do you want to say? Who do you want to say it to? And what do you want them to think, feel, or do afterwards?’ I say it, I hear people in my team say it over and over again, and it's amazing how people come and they're like, 'Oh, we want to do this, we want to do a website, we want a new app.' And you sort of think, 'Hold on, let's just go back a bit here. What do you want to say? Who do you want to say it to? And what do you want them to think, feel or do?' It sounds really simple, but that's the one bit of advice that has just run through all of my career.

Can you recommend a book that’s inspired you?

There's a book that I always go back to – 'Content Design' by Sarah Winters. It's just so simple. And I think it's a great antidote to when people try to overcomplicate communications. It just made me think, 'Oh yeah, it's not just about the words that you write. It's about visually where they are, where they sit, the hierarchies of that text.' I don't get to do much comms work now, but when I do, I absolutely love it.