As an organisation that protects and promotes the interests of patients and the public in research, it is important that we have a good understanding of what these interests are. By involving and listening to the views of patients, carers, advocates, service users, and members of the community, we help to ensure they are placed at the centre of what we do.
We involve people from all walks of life, whether they have little or no knowledge of health and social care research through to patients and carers of people who have taken part in clinical trials.
These are just a few examples of the different ways we work, adapting our approach depending on the task and who we need to hear from:
Volunteering on committees or groups convened by the HRA
People volunteer to be on different HRA committees such as:
- Research Ethics Committees
- Confidentiality Advisory Group
- Community Committee
- Make it Public group
- Shared Commitment to Public Involvement group
many of whom do not work in clinical research or health care or have a background in it. Their views and opinions are important and sit at the heart of the HRA’s commitment to protect and promote the interests of patients and the public in research.
Workshops
When developing new policies or guidance, we often bring together people with different experience and insights to learn what matters most to them and how we can be effective when making change.
To understand the experiences of people that might not know about us, we also collaborate with different community organisation and advocacy groups.
In 2024, we worked with Expert Citizens in Stoke-on-Trent to improve our GDPR information for research participants.
Reviewing our work
Sometimes we invite people with relevant experience and skills to contribute their perspective or read and provide feedback on draft documents. These could be policies, processes, guidance, blogs or something else.
In 2024-25, we worked with members of the public at different stages of developing our 2025-28 strategy.
Supporting staff recruitment
We work with a group of people who help us recruit the best people to work at the HRA. Public contributors support this work in different ways including sitting on interview panels and taking part in stakeholder engagement activities.
Read a news story about how our public contributors have supported recruitment.
Public engagement
Sometimes we need to hear from a wide range of people who may never have heard of the HRA, to check our thinking or inform our decisions. In this situation, we use different approaches. Here are two examples:
- in 2023, we commissioned a study to understand public perceptions of health and social care research. YouGov collected data from a representative sample of 5,030 people from across the UK.
- in 2022, we worked with research specialists Hopkins Van Mil to find out more about the public’s hopes, fears and expectations about ethics review of research. 46 members of the public took part in a ‘public dialogue’. They were drawn from a wide UK demographic, with more people from ethnic minority and lower socio-economic groups to ensure their perspectives were heard
Surveys
In 2022, we circulated a survey to find out what mattered most when it comes to taking part in research. 400 people completed the survey, including researchers, NHS staff, and members of the public. The results helped to shape our People-Centred Clinical Research project.