Public involvement in health research: what it’s like, what I’ve learned, and why it matters

 

 

Interview with Louise Ting, Member of the Centre for Academic Primary Care Patient and Public Involvement Steering Group

Louise Ting has been involved in service delivery and health research from a patient and public perspective for over six years. She has a passion for ensuring that patient and public involvement (PPI) is done properly and is meaningful both for researchers and for public contributors. Louise is a member of the PPI Steering Group at the Centre for Academic Primary Care, University of Bristol.

How did you find out about public involvement in research?

I first heard about public involvement when there was a large-scale commissioning exercise in Bristol for procuring the next set of mental health services in the city. They were asking people who had used services in the past to give their views and help assess the different bids by potential providers.

There were lots of different doctors, psychologists and commissioners involved in the project. They let me know of other opportunities related to public involvement and I just picked up the ones I felt I could contribute to. You end up meeting quite a few people who then introduce you to others working in areas you may also be interested in, or hearing about projects through affiliate organisations and their newsletters. There’s a lot going on but of course, not everything is going to match your experiences or expertise.

The activities can be very varied. Sometimes they would want to meet you in person, other times they might ask you to fill in a form and contact you if your experiences were a fit for what they were looking for. There were also things like public contributor workshops and panel meetings.

If you felt comfortable going to an initial meeting, people were very welcoming and happy to talk about their project.

What kind of activities would PPI in research typically involve?

It depends on the stage of the research study. Sometimes they ask you to email them if have any ideas for things to investigate. Or maybe they’ve produced materials and want members of the public to make sure they’re accessible and easy to understand for the population they’re hoping to target. Other times they want people to meet up regularly to comment on the study progress or help problem-solve.

What is it about being involved in research and service delivery that appealed to you?

I’d had quite negative experiences of current services and so what appealed to me was being able to turn that into something more positive. Being able to have a voice, to say “This didn’t go quite so well and if you select a new provider you should prioritise these particular aspects.”

After I did the commissioning work I realised my experiences could translate into something broader… It didn’t necessarily have to be around health delivery; it could be more on what they might look at in future. I was involved in a study where they had problems recruiting people with experience of a particular mental health issue and we worked together to discuss how we could tackle that to improve participation.

What are the challenges of doing PPI?

PPI can be very broad which makes it very challenging because whenever you approach something new it can be very daunting, and often you’re expected to do things with lots of different people. You have to establish a relationship with them quite quickly and to understand what’s expected of you.

One of the biggest barriers is the ‘them and us mentality’. Sometimes you may attend a meeting where the person who has asked you to be there has not really explained to everyone else why you’re there. You might feel outnumbered – you might be the only public contributor, and it’s hard to feel empowered and recognised.

Do you think this is changing?

It definitely is. It probably helps with the national initiative around incorporating PPI into research and raising the profile of it. A lot of researchers are becoming more knowledgeable about PPI and how it can enhance projects.

What’s helped in the past was asking for a pre-meet to discuss the agenda and also to meet the chair to get to know them a bit better, introduce myself properly, and to ask them how they think public involvement can be incorporated into the agenda, to promote it among other group members.

Where else do you feel your involvement has made a difference?

I helped to develop a mental health App looking at strategies for enhancing wellbeing, especially during times when you’re feeling anxious or distressed. Sometimes if you’re unable to leave the house or feeling isolated, having something handy on your phone can be quite convenient. They were trying to have evidence-based health information presented on the App in a clear way, which you could access with just a few taps.

The project lead was a joy to work with. He really made you feel valued for your contribution. For me to make a comment and then for him to say the next week “I’ve changed that because you are the expert in this area” made me feel that I’d made a difference. It was quite exciting as well to see the stages it went through before it was up and running.

What skills do you get out from doing PPI?

Professionally it can be really helpful. A lot of the skills you need in PPI activities are ones that you can definitely put on your CV. They can be useful in the general world of work, or even just for interacting with others. If you’re involved in the project long term you get quite good at listening respectfully, giving feedback to other people, acknowledging that they had very different views. It’s important that you realise everyone in that room has something to bring to that discussion. You get skills around decision-making, problem solving, communication. These things all help build your confidence.

Why is public involvement in research important?

Researchers want their study to improve things for people, to shed light on how they access services, manage pain, or take their medication – or other struggles. You can’t really do that without speaking to those people. If they are involved from the outset you can find out quite quickly whether or not you’re looking in the right areas.

Public involvement is really important in allowing people to have a voice, to make sure you’re addressing priority areas, that your research is relevant, and also how to recruit and retain participants. If you’re speaking to people who live with that condition or know people or care for someone with that condition they will know more about how best to reach them, what motivates them, what makes them feel valued.

It’s vital to ensuring that the research benefits the people it’s meant to and in helping you to carry it out as efficiently as possible. PPI has had to evolve out of people realising it’s not always ‘the doctor knows best’. For example they might say that your mobility is the most important thing and tell you to carry out certain physiotherapy exercises. But for the patient, carrying out those exercises may be so exhausting or painful that even if they can move around they don’t have a quality of life, or it stops them doing other things. It’s only by talking to the patient that you find out what means the most to them and how you can offer the best advice or treatment options.

Is there anything you feel is missing about how PPI could be improved?

You get good PPI and bad PPI. What’s needed is culture change within an organisation where you’re able to shift gradually towards including PPI not just as an add-on but embedded within the faculty, the department, in the hospital or university, with researchers understanding the value of including PPI and how to carry it out effectively.

It’s about people being aware of what PPI adds to a project and having a consistent approach when working with public contributors – one where everyone is equally able to have an impact on a meeting or task and to voice opinions, you’re aware of what your remit is, who the main contact is, that things are accessible, that jargon is avoided and that you’re introduced to everyone properly.

Other examples of PPI work you have enjoyed?

I’ve really enjoyed helping evaluate health research applications for the National Institute for Health Research. If you’ve got a long-term health condition it’s lovely to receive funding applications that propose to look into your condition because it gives you hope and it makes you think people are recognising that this area needs to be investigated or services need to be improved, and they value your experiences. It’s a very different piece of work to all the other types of sitting on a panel, or on a board, or going to a workshop.

It’s very rigorous and detailed, but it’s something that I felt was really rewarding. It’s close to my heart.

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