“Our message about public involvement is don’t be afraid to start.” Interview with Barbara Molony-Oates from the NHS Health Research Authority

Summary

In this interview, we speak to Barbara Molony-Oates, public involvement manager at the Health Research Authority about why it's important to involve patients and members of the public in health research. Barbara tells us about the Shared Commitment to Public Involvement, a partnership of research organisations working together to promote, support and improve public involvement in health and social care research. She describes how the Shared Commitment was developed and how it is helping researchers involve individuals and communities who have never before considered taking part in research.

About the Author

Barbara is a public involvement manager at the Health Research Authority. She has helped lead the development of the Shared Commitment to Public Involvement in health and social care research with the HRA and NIHR. This is a growing partnership of leading organisations who are working together to promote, support and improve public involvement in health and social care research. 

Barbara holds a MSc in physics from Royal Holloway University of London, a PgCert in secondary mathematics and a PgDip in therapeutic radiotherapy. She has worked in clinical research delivery and is passionate about supporting researchers to involve patients and carers with lived experience in all parts of their research from inception to dissemination.

Questions & Answers

Hi Barbara, please tell us about yourself and how you became involved with the Health Research Authority?

I am a research radiographer by training and several years ago I was working in a role introducing cancer patients to clinical trials on offer at the hospital. I was also involved in the long-term follow up of people who had been involved in trials. When I spoke to patients about their experience, some were telling me they weren’t happy with the trial and wished they hadn’t taken part. They also said the questions I was asking them weren’t capturing what they wanted to tell the researchers and trial sponsors. I was asking factual questions about bowel problems, blood tests and medical symptoms, but they wanted to report the impact the trial had on their lives. I realised that researchers could be counting a trial a success, but patients were reporting a negative impact on their lives and regretting their decision to get involved.

The experience made me want to speak up for those patient voices that weren’t being heard, so I decided to look for a role in public involvement in research. That’s when I found my current position as Public Involvement Manager at the Health Research Authority (HRA). I realised the HRA was an organisation that could have a real influence because it works with other organisations across the UK to regulate all research done on NHS patients, their tissues and their data. 

What does the Health Research Authority do?

The HRA was set up to protect and promote the interests of patients and the public in health and social care research. One of the functions of the HRA is to provide a research ethics service. Our Research Ethics Committees (RECs) review and provide an ethics opinion on all types of research in the NHS or in social care which involve people, their tissue or their data. RECs also review studies which test medicines in humans for the first time. Working alongside our staff, we have around 850 volunteers who are appointed to one of our RECs and undertake the ethics review. The research application must receive a favourable ethics opinion before it can start. Some of the volunteers are doctors or experts in their field, and some are lay people with an interest in making sure people who take part in research are treated fairly, ethically and transparently.

Once a piece of research is complete, we ask the researchers to publish plain language summaries talking about how the research has gone. Our aim is to help people understand research better, trust it more and feel they are able to participate in it. One of our key aims is that people are able to find out what research is happening or has finished, as this will help prevent researchers wasting money doing the same thing over and over again.

What is the Shared Commitment to Public Involvement and how did it come about?

Public involvement has always been a ‘bottom-up movement’ of people on the ground with lived experience expressing their desire to contribute to and inform research—but to make it ‘business as usual’ it needs some top-down support. When Covid struck, we noticed a huge drop in the level of public involvement included in applications. Before the pandemic 70-80% of applications would mention some form of public involvement. During that first month of the pandemic, the figure was 22% so we got together with 13 research organisations including the National Institute for Health and Care Research (NIHR), Health and Care Research Wales, Health and Social Care Northern Ireland, NHS Research Scotland, UK Research and Innovation, the Association of British Pharmaceutical Industries, the Association of Medical Research Charities, who could influence health and social care research. We all recognised how important public involvement is, especially during a pandemic. So, we put out a joint message asking people to prioritise public involvement and offering them support to do it. For example, hundreds of thousands of people were on furlough, so we set up a matching service to help researchers connect with the people keen to help. 

Six months later, we did a review and found that the level of public involvement in applications had gone up to 85%, which was the highest it had ever been. We conducted some workshops with researchers and members of the public who had got involved, to find out why public involvement had increased. We thought it was the matching service that had made the difference, but discovered that it was actually the strong leadership across the sector that had changed researcher’s behaviour. As a researcher, whichever organisation you approached, you heard the same message. 

We decided to draw up a joint statement outlining the importance of public involvement and committing to help researchers to do it. From September 2021 to March 2022, the 13 organisations met regularly with members of the public involved in those organisations, and we developed the Shared Commitment to Public Involvement in Health and Social Care Research. Importantly, the statement involved us committing to public involvement in our own organisations. 

How has the Shared Commitment developed since it was launched?

Since we released the Shared Commitment, more partners have joined and we now have over 20 partners, with new organisations joining regularly. We’re also getting international interest. It’s becoming a mechanism for change that allows us to push back and provide support for researchers who say they can’t do public involvement. Health Data Research UK has become a partner, which is really important as a lot of people doing research with health data question how you can involve the public in that kind of study. We’re able to offer support to allow researchers to think differently about the importance and practicalities of public involvement.

We’re also breaking down the silos that exist in the system. Until recently we were all writing our own policies and guidance about public involvement. The Patient Experience Library did some research last year and found 536 different public involvement toolkits! Shared Commitment partners now meet up every quarter and share what we’re doing, working together to produce and disseminate resources that will benefit everyone. It means that whoever you go to, you will be able to get consistent advice on how to do public involvement in research well.

We’ve also recently developed some joint policies around paying members of the public for their involvement in research. It’s really important to pay people for the work they contribute, but organisations have to consider the best way to do this. The new guidance helps us to promote consistent practice across the sector, and organisations can trust it as we have checked it with HMRC to ensure it fits their rules.

The NIHR has created Learning for Involvement, a website where people, including members of the Shared Commitment, can upload resources we think will be of benefit to the community. It’s all about working together to make things easier for researchers to get it right and reducing wasted time and resources. 

What have been the challenges in implementing the Shared Commitment?

The best thing we did was practising what we preached. At the very beginning each organisation brought along members of the public who had worked with us before. When the first version of the Shared Commitment was circulated, the members of the public reviewing it said it was too long, complicated and jargonistic. The final version is so simple and is just a single A4 page. It was an important process and shows that lot of thinking goes into getting the few right words! 

Some of our partners were concerned that signing up to the Shared Commitment might create a barrier for big commercial organisations to come and do research in the UK. But that’s not what we’ve seen. In reality we’re promoting approaches that are best practice across the world. The UK is a great place to come and do research because of our diverse mix of people, communities and cultures. Our cultural diversity combined with our single health system are massive assets to enable truly representative and inclusive research that we don’t shout about loudly enough. One example is in Bradford where the Bradford Institute for Health Research recruited record numbers of research participants last year, 70% of whom were from the poorest corners of the city, and more than half of whom are from minority ethnic communities.

It often wasn’t too difficult to get organisations’ governing boards to approve the Shared Commitment. We aren't saying anything new, we’re just bringing together a consistent offer of support and resources to enable researchers to involve people with lived experience throughout the research cycle and improve their equality, diversity and inclusion in recruitment.

What has the Shared Commitment achieved so far?

Several of our partners faced issues trying to pay members of the public for their involvement, and joining the Shared Commitment has allowed them to push this agenda forward and find a way to make it happen. I’m also increasingly seeing the Shared Commitment referenced in papers that are being published, which means awareness is growing amongst the research community. 

Part of the Shared Commitment to Public Involvement is about embedding public involvement in the internal decision-making process of the organisations who become partners, so that it becomes part of the fabric of each organisation. At the HRA we set up a Community Committee as part of our governance structure which advises the HRA Board both on how we operate in practice and our bigger strategic ambitions. The aim of the Community Committee is to help the HRA learn from our community and earn trust in the way we work and what we set out to do. It includes members of our Research Ethics Committees, our Confidentiality Advisory Group and members of the public. When we bring together people from different groups with different perspectives, they don’t always agree. Managing that is difficult, but by doing it ourselves we become better at helping researchers because we can understand the challenges that they can experience properly. We want to learn ourselves how to involve people well, and then share that learning more widely. It allows us to say to researchers, ‘we know it’s different, and a new way of working, and we can help you overcome the barriers you face because we are working through them too.’

How are you reaching communities and members of the public who have never considered taking part in research?

Every organisation involved in the Shared Commitment is trying to expand its reach and learn how to be inclusive, including the HRA. About three years ago, we did a series of workshops with people who had never heard of us to find out what they think we should do differently. You can read about the workshops in the HRA’s Think Ethics Public Dialogue: a findings report. Some of the participants said that if they had known we existed, they would have wanted to get involved in our work and would have trusted research more. 

We decided to start by building links with one well-established community group in Manchester before expanding our connections with other groups. We recognise that community-based organisations are not funded or resourced to speak to researchers. We don’t want to put pressure on small voluntary sector organisations, but the point is to work together to find out what the HRA can offer their community and how they would like to interact with us. So, we’re learning how to build relationships and that takes time. We are committed to learning, and sharing that learning with others.

Our message to every organisation and researcher is ‘don’t be afraid to start’. A lot of people are afraid of public involvement because they are scared of making mistakes in areas like diversity and inclusion. But we don’t expect people who become partners to be perfect, they just need to have a commitment to public involvement and be willing to learn. If you go into it knowing you will make mistakes and will learn about your own biases and work out how to improve, then you can’t go wrong. 

What are your next steps?

One of the biggest issues with public involvement is that researchers want empirical proof that it improves the research. We know there are lots of benefits, such as making the research more relevant, highlighting bias, helping to improve understanding and consent and reducing waste. However, it’s not ethical to run a study with and without public involvement to make that comparison, so we have to collect evidence from a wide range of sources. Our focus going forward is to work together to collate that evidence so that we can show the value that public involvement adds to research.

If your organisation is involved in health and care research, you can apply to become a Shared Commitment partner. Find out more on the Health Research Authority website.

Related reading

• Health Research Authority: Putting people first - embedding public involvement in health and social care research (18 March 2024)
• Toolkits mountain - Patient Experience Library (September 2023)
• Medicines, research and female hormones: a dangerous knowledge gap
• How is ethnicity reported, described, and analysed in health research in the UK? A bibliographical review and focus group discussions with young refugees (17 October 2023)