Published: 24 January 2022
A survey of public contributors involved in NIHR’s work has shown that patients, carers and the public are involved across many different stages of research, and the majority of people report a positive experience.
NIHR aims to involve patients and the public in all its work. This helps shape the research it funds and ensures the findings will be relevant and important to the people they might affect.
This survey – carried out between July and August 2021 – is the largest survey of NIHR public contributors to-date, receiving 819 responses across England. It builds on a previous survey, carried out in 2019.
The survey aimed to capture the thoughts and experiences of people who are involved with NIHR’s work, to help identify ways to improve. It was open to anyone who was involved in the work or research of NIHR, including:
- at one of our centres, facilities or funded programmes
- as a member of a local or national advisory group
- reviewing research applications
- being a co-applicant on a research study
- helping design, deliver and disseminate a research project
- as a Research Champion
Survey respondents reported being involved in the many different stages of research, from helping to identify important research topics to helping to share the findings. The results showed that 79% of people involved with the NIHR felt satisfied or very satisfied. Respondents welcomed the opportunities to be involved in the NIHR’s work and research, which they felt was important and much needed. In addition, a majority of survey respondents (63%) felt their involvement had made a difference , with a further 19% stating it had sometimes made a difference.
However, the survey did also identify some areas for improvement. Many people’s responses about what would have improved their experience centred around the pandemic. Although people understood the need for video-conferencing and acknowledged its benefits, respondents reflected that physical meetings were important to build relationships, form effective teams, and ensure successful involvement.
Other areas for improvement included making sure public contributors receive feedback, acknowledgement and updates on projects they are involved in. People reported that there was currently wide variation in whether they were kept updated. Finally, respondents flagged inconsistencies in how they were reimbursed for their time and expertise, stating that processes needed to be simpler, clearer, or better.
Jeremy Taylor, NIHR Director for Public Voice, said: “It is very important that patients and members of the public have opportunities to shape our research and that their input is valued and makes a difference. This survey is encouraging because it confirms that a majority of the public contributors who responded report a positive experience with NIHR.”
“We also absolutely recognise the need to do better in a range of aspects. We also need to make involvement more diverse and inclusive, opening up opportunities to a wider range of contributors. The survey results will directly inform our existing improvement work. That includes, for example, promoting the UK Standards for Public Involvement and making payment systems work better.”
Tina Coldham, Involvement Advisor at the NIHR Centre for Engagement and Dissemination, commented: “It is heartening that NIHR is hearing the public voice in its work. But also, that people are able to put forward ideas for improvement to better involve them. This has the ultimate aim of making research more relevant, and have more reach.”
“I am very happy to hear that people involved in research in so many different and exciting ways are having their voice heard and acted upon. The NIHR can do much better though, is committed to improving, and we can do our bit to help that happen.”
The results from this year’s survey provide a useful assessment of public involvement in the NIHR’s work and research across England. These results come at a time when we are continuing to strengthen public involvement. They will help colleagues across NIHR to understand the factors that affect people’s experience of being involved in research.
Find out more:
- Read the executive summary of the survey results
- If you would like a PDF copy of the full 2021 survey report, please email ced@nihr.ac.uk
- Learn more about being involved in research and what it means