Getting people involved in research: the role of the UK Standards for Public Involvement in Wales
Participation in health research has been in the spotlight more than ever in the past 12 months, with one million people across the UK participating in COVID-19 research.
But we’ve heard less about the crucial role of public involvement. This is when members of the public share their personal experiences to help researchers design and deliver their study. It’s a vital part of making research effective and relevant to the people it is intended to help.
Published in November 2019, the UK Standards for Public Involvement aim to improve the quality and consistency of public involvement in health and social care research. They were developed between 2015 - 2018 through a partnership of all four UK nations, with Health and Care Research Wales playing a key part in the consultation process and the year-long pilot programme which took place in 2019.
Giving public involvement an identity
Barbara Moore is Senior Public Involvement Manager for Health and Care Research Wales and her role is to support and promote public involvement in health and social care research across Wales.
Barbara said: “Right from the start, there was a strong appetite in the health and social care research community for the creation of a set of principles which would lay out what good public involvement looks like.
“Across the four nations there was real variety in how public involvement was being carried out. It wasn’t always done in a way that was empowering or rewarding for the public and both researchers and the public were calling for guidance.”
For the next few years the nations worked together to drill down to six focus areas for good public involvement. Bob McAlister is a member of the public who was closely involved in this process and the development of the UK Standards for Public Involvement.
Bob said: “The process of developing the UK Standards was actually a great example of public involvement. I was a fully contributing member of the group. Our task was to create guidance for an activity that was already underway across the UK so there was a need for the new standards to include all that was already working well.
“I think that we achieved that due to the experience of group members and the regular consultation. Whether you are a researcher, a funder or a member of the public like myself you can now find help with aspects such as study recruitment, how to work effectively together or measuring the impact of your joint efforts.”
Barbara said: “The UK Standards are really important because they give public involvement an identity. They provide anyone working in research a point of reference on how to involve the public in a way that is inclusive and has real impact. It was a turning point for researchers to have them to refer to and they have been used to inform so many research studies and processes in 2020.”
The six UK Standards are: Inclusive Opportunities, Communications, Support and Learning, Working Together, Governance, and Impact.
Barbara said: “When we did consultations with people piloting the standards, Governance and Impact were the two areas where they said they struggled. In practice it’s about involving the public in the management of research and sharing the difference their involvement has made.
“It’s about involving members of the public from the very beginning and taking them on the research journey with you.”
Putting the public at the heart of decision-making
One organisation that has worked hard to involve people affected by genetic conditions and members of the public in governance decisions is Genomics Partnership Wales (GPW).
In April 2019 GPW launched the Patient and Public Sounding Board with the support of Wales Gene Park, which is part of the Health and Care Research Wales community.
Emma Hughes, the Patient and Public Involvement Lead at Wales Gene Park, said: “It’s a key objective for us to improve people’s understanding of genomics and to share our research in a way that is open and accessible. We established the Sounding Board to put the experiences of patients and the public at the heart of our decision-making.”
There are currently 18 people sitting on the Sounding Board who represent a range of ages, genders, locations and experiences. Members sit on the panel for two years.
Emma said: “The whole ethos of the Sounding Board is based on the UK Standards for Public Involvement. We aim to make everything a two-way street; we ask the board what are priorities for them and how we can improve the public’s experience, rather than us always setting the agenda. We involve them in every aspect of the programme.”
It’s not just about the research process either, the Sounding Board plays a key role in shaping future clinical services for families.
Emma said: “At the moment the Board are supporting the development of a new genomics facility. Members have highlighted key areas of focus, ensuring the layout is more inclusive and have provided some great suggestions for designing the set up. The ways members are involved with the work of GPW is broad and their input is always invaluable.”
New training package for Wales
For the past six months Barbara and her team have been working on a new training package which will help those working in research to use the UK Standards for Public Involvement.
Barbara said: “We wanted to create a simple online resource that was specifically for Wales. This new training package will take research staff and the public through the basics of what they need to know and how to apply the UK Standards in their work.
“We don’t want public involvement to be an afterthought. Members of the public play such an important role in making health and social care research in Wales better. All researchers have to do is ask them. We hope this training will encourage those working in research to reflect on the many meaningful ways that they can involve the public.”
Researchers, if you would like support involving members of the public in your research, contact our public involvement team
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First published: 31 March 2021