Breaking down barriers: making it easier for the public to participate in health data research

Some names have been changed to protect the privacy of our contributors.

Background

“A highlight for me is the support that’s been offered. I’ve never had this level of support in any of my other opportunities. Talking about the Induction, I came home and cried, I felt so supported!” Leanne Dylan, member of the Bennett Institute’s new Patient and Public Involvement (PPI) group - the Experience-led Public Involvement Committee or EPIC.

In the first blog post in this series, I talked about the role that Patient and Public Involvement plays in health data research, and our ambition to lower some of the barriers that members of the public who want to get involved can face.

These barriers – the things that stop people from getting involved – may be purely practical, such as working people or those with caring responsibilities, unable to take part in meetings, or people not having the necessary tech, or tech skills to take part.

The barriers might be more personal, or psychological. Some might lack the confidence to dive into a world that seems very different from their own, or feel like they might not be “good enough”. And then there’s the whole matter of actually finding out that PPI is “a thing” and what the opportunities for involvement are.

Making it easier for people to get involved – what did we do?

Let’s take a closer look at that final factor – how people find out about opportunities for getting involved. It’s a bit like match-making. We were looking for people with lived experience of using NHS Talking Therapies, who in turn wanted to use that experience positively. We also wanted to let people who hadn’t been involved in research before, know about the opportunity.

So our initial recruitment “advert” was shared via different mental health organisations, for them to share with their networks. It also went out to PPI organisations. This initial approach yielded over 60 people with a wide range of demographic characteristics.

The wording of the advert helped, according to Curie Freeborn, who’s now a member of our EPIC PPI group. Curie is a lived-experience consultant from an underrepresented group, and appreciated that we were “looking for certain demographics that are currently under-represented, such as ethnic minorities.”

Another barrier we needed to address was people’s perception that lack of experience or knowledge would stop them from being invited to collaborate. For example, before her interview, Leanne Dylan, another EPIC group member, was worried that she wouldn’t have enough experience to participate. Without a science background, she was afraid that we’d ask specific questions about data that she wouldn’t be able to answer.

But during the interview, Leanne’s thoughts shifted. “As we got more into it, and my experience with health and mental health in general, talking about me being quite under-represented, quite excluded, I then felt that actually, my input could be really useful.”

Creating a culture where people can take part

Another barrier I’m keen to pull down is people’s feeling that “PPI is not for me”, because of its often academic setting. Academia does have its own way of doing things, its own language and structures, which can seem far-removed from most people’s everyday life. And this means creating a culture that welcomes everyone.

We’ve started this process. From the get-go, the EPIC members have had choices about how, when and where they take part to enable as many of the group as possible to contribute, if they want to. They’ve also co-created the agendas and content for their online welcome meeting and full-day hybrid induction workshop.

As Curie puts it, “You seek to get the perspectives of the PPI participants, that’s really important, because not all researchers do that, not all researchers are really committed to getting the perspectives of PPI participants. They might not at first recognise the benefits. You’ve started by being open and transparent - this is what I can do; this is what I can’t do and that’s you’ve invited us almost to trust you as a result.”

Another group member, John, also from a group that’s under-represented in research, says that even just asking about people’s needs helps put them at ease, and able to be their best version, “Being accommodating, being flexible, not being rigid about having to have your camera on and stuff like that.”

Ah, online camera “etiquette” for meetings. It’s an issue that some have strong views about. There’s always a suspicion that if a camera is off, then a person may not be engaging fully. But for some people, having their camera on, is deeply uncomfortable and would stop them participating. So it’s best to agree, as a group, rules of engagement that work for everyone, and not just impose a fixed rule.

Not imposing fixed rules has been, and will carry on being, an important part of building an accessible culture. Originally we planned to make EPIC’s induction workshop as an in-person event only. But it became clear this would have left some people out, so it was hybrid.

John, an online participant, said this worked, “I was really surprised, as it was done really well…we were given regular breaks, happy with the content, liked the fact there was a specific moderator for the online people as that meant that we were listened to, and our needs taken care of..I didn’t feel at any stage that I was being ignored or excluded because I wasn’t there in person.”

So, where are we now? I do think we’ve started the process of lowering the barriers to involvement, to create a welcoming and inclusive culture. Of course, there’s always more to do and it’s incumbent on me to ensure this way of working continues and spreads and takes root among all those working on the OpenSAFELY NHS Talking Therapies project.