Welsh Government
How Wales gave ordinary people a vital say in research

How Wales gave ordinary people a vital say in research

6 June 2018

When Barbara Moore started her nursing career in the 1970s, health and social care research wasn’t a big feature in her training manual. And, although doctors and nurses were asking patients and members of the public for their opinions on research studies, it wasn’t anything like we know today.

There’s always been some form of this work, often called patient and public involvement (PPI), since the NHS was launched in Wales in 1948; it started with local councillors sitting on health authority boards and then progressed to the formation of Community Health Councils.

It wasn’t until the late 1990s when PPI became a mandatory, core commitment of the NHS, ensuring patients and the public had a say on their treatment as well as healthcare policies. However, that level of public involvement in clinical research happened much more recently.

Wales has led the way for a long time in developing good practice in public involvement and has played a major role in defining UK-wide standards.

As the NHS marks 70 years, we speak to Barbara about the changes she’s seen – going from caring for patients on the ward to becoming a champion for public voices in research.

‘I haven’t looked back’

Barbara is the senior public involvement and engagement manager at Health and Care Research Wales, a role she’s been doing since 2015.

“I started nursing in the 70s and I can’t say that research was a focus at all during my training,” remembered Barbara.

“Having said that, nursing was absolutely about caring for people and doing the things that they couldn’t manage to do themselves.

“A lot of it was around tasks and I don’t ever recall being told about evidence base but I do remember the treatments that were given to people and over the years I obviously saw those treatments improve.”

Barbara was working on the wards and in out-patients when she became aware “there were people called research nurses, and I was very interested in what they were doing.”

“An opportunity came up for me to apply for a job, and I was encouraged by the staff in out-patients, where a lot of the activity with research seemed to be going on, and I haven’t looked back I suppose,” said Barbara.

‘Naïve’ about public involvement

In 1999, Barbara became a research nurse at Velindre Cancer Centre where her role involved explaining standard treatment to patients as well as making sure they understood what was involved in a study.

“I have to say at that point my focus was on participation,” commented Barbara, “and I was pretty naïve to how the public might have been involved in developing some of those studies that I was talking to patients about, certainly about the way it was communicated.

“One of the areas that the public do have a big input is into the written patient information, which patients receive about specific studies, and I have seen that change a lot since I first started. I’m sure much of that can be attributed to the public reviewing that information and helping the researchers to put things into language that is understood.”

Barbara’s career saw her take up roles with Cancer Research UK, where she recruited patients into trials but also supported patients to lobby parliament and worked with the media to ensure patients’ voices were heard.

Eventually Barbara worked closely alongside the team that were involving members of the public in research.

“So, that is members of the public who are not participating in research studies but members of the public who are working alongside the researchers to develop the research ideas and beyond – the whole research journey.

“Involvement is very much about ensuring the needs and concerns of the people who research is going to affect, and the lives it’s hopefully going to improve, are heard.

“That’s how my career has taken me down the path of now being very much about managing public involvement, and facilitating and supporting it to happen within the Health and Care Research Wales infrastructure.”

Since our launch on 14 May 2015, we have been championing a culture of all research being ‘with the public, for the public’.

Our dedicated Public Involvement and Engagement Team match and support researchers and members of the public so they can work together on studies.

Setting the standards

In March, new National Standards for Public Involvement were published, which Barbara collaborated on with UK colleagues.

“A lot of work went into developing the standards, to ensure it’s something that’s not seen as a ‘you need to do it like this’ but actually something to assist you to look at what you’re doing and how, and to develop what you are doing into a best practice. So although there are different models, the Standards can apply to any model.”

Whether it’s helping to decide which studies should be funded – or making sure patient information is easy to read and understand – the public can work alongside researchers at every stage of the process.

“I think that one of the biggest changes is there’s now an expectation from funders of research,” added Barbara, “when funding applications are presented to them, they expect to see that there has been some public involvement in the development of that funding bid and the plans for the study.

“Ideally no research should really be funded without public involvement actually happening.”

Rewarding to see the impact

There is still work to be done to keep driving public involvement forward which is why HealthWise Wales, our flagship platform for engaging and enrolling the nation in health and social care research, is setting itself up to reach even more people.

“We’re not there yet,” said Barbara. “It would be good to get to the place where public involvement is not seen as something to be thought of at a point down the journey but right at the beginning of the journey.

“We haven’t got all the answers but it’s a very exciting area to be involved in and what’s really rewarding is seeing the impact it can have – studies can become more relevant to the needs and concerns of people and therefore people are interested in those studies and willing to participate in them and that informs practice.

“It’s not any one research project or study that stands out to me from over the years, but it’s where studies have been struggling to recruit and small changes suggested by members of the public actually turn around recruitment. After all, if you don’t recruit you’ll never get the results of your study, which could improve lives.”

Find out more about the impact of public involvement in research by reading Radha Nair-Roberts’ story here.