The Health Research Authority (HRA), Arthritis UK and the Charities Research Involvement Group (CRIG) are seeking feedback on a proposed shared set of patient and public involvement questions for use across health and social care research.
The proposed question set is designed to support greater consistency across funding and ethics review applications and journal submissions. It aims to reduce the burden on researchers, improve the quality of information available to reviewers and promote a more aligned approach to public involvement across the sector.
We're particularly keen to hear from researchers and others with direct experience of completing research application forms and answering questions about public involvement, as this perspective has been underrepresented in feedback received so far.
How to take part
Review the draft guidance for applicants and the draft question set below and complete our survey. The survey takes around 15 minutes to complete and closes on 25 September 2026. For further information, contact public.involvement@hra.nhs.uk.
If you require the information below in a different format, please contact the email address above. You can also download a PDF version of the draft guidance and question set.
Guidance for applicants
Why involvement is important
Patient and public involvement is important and possible in all research, from laboratories to communities, and research into health and social care. It is an essential part of research and has been shown to improve its quality, impact, and the outcome for people with lived experience. It matters to funders and to others such as Research Ethics Committees.
Research that includes people with lived experience is more relevant, acceptable, and better communicated. Excellent involvement is inclusive, values all contributions, and ensures people have a meaningful influence. It will look different depending on the size and type of the research being planned or undertaken.
Proposed shared questions about patient and public involvement in health and social care research
Definitions used
People with lived experience: We have chosen to use this term to describe patients, carers, advocates, service users, members of the public and members of particular communities.
Patient and public involvement (PPI) is where research is carried out 'with' or 'by' people with lived experience – such as patients, people with lived experience, carers, advocates, service users, or members of the community - rather than 'to', 'about' or 'for' them.
These individuals work in partnership with researchers, shaping what research takes place, how it is carried out, and how the results are shared and applied in practice.
Patient and public involvement is not the same as:
- engagement: by engagement, we mean where research and people connect, breaking down barriers and sharing information, for example, through open days, sharing a blog on social media or sharing results of research with people with lived experience
- participation: where people take part in a study as participants, for example, completing a survey or being part of a clinical trial
Guidance on completing this part of the application
We recognise that there is no one ‘right’ way to involve people with lived experience in research – it will depend on the type and scale of the research and the community the research is focused on. For example, we would expect involvement in a small laboratory-based study to be different to involvement in a large clinical trial. So there are no ‘right’ answers to the questions in this section of the application form.
We support the UK Standards for Public Involvement and encourage you to refer to these when completing this section.
Use plain language and non-technical language when completing the questions in this section.
Include as much detail as you can in your answers. This will allow reviewers to assess your application accurately.
Question set
Project planning A
In this section you will be asked about the different ways people with lived experience have been involved in planning this project.
- When planning this project, which activities have you involved people with lived experience in?
Select all that apply
- developing the research questions - for example, you might have discussed their needs or worked together to identify or prioritise the research question.
- developing an application for funding or ethics review - for example, as co-applicants, review panel members or contributors to your future public involvement plan.
- designing the project - for example, in defining outcome measures, agreeing a recruitment strategy, or designing participant information.
Project planning B
Tell us about how you involved people with lived experience in planning and designing this project.
Include:
- how you involved them
- who you involved (include approximate numbers)
- how you found them
- why these people were the appropriate people to involve
- training and support you have offered
If you have not involved people with lived experience at the planning stage, explain why not.
2. How have you involved people with lived experience in planning and designing this project?
Free text (max 500 words)
Impact of involvement
In this section you will be asked what you learned and changed as a result of involving people with lived experience in the planning and design of your project.
Describe whether the involvement:
- influenced the question that you are addressing
- led you to change study protocols or outcome measures
- led to amendments to participation information materials
- raised your awareness about particular challenges that participants might face
- gave reassurance that your planned approach is the right one
- influenced the writing of this application
3. How has working with people with lived experience had an impact on the design of your project?
Free text (max 500 words)
During your project A
In this section you will be asked about the different ways people with lived experience will be involved during this project.
4. Which activities will you involve people with lived experience in during this project?
Select all that apply
- managing the research - for example, as part of a group or committee that makes key decisions
- carrying out the research - for example, carrying out interviews or co-facilitating discussion groups
- analysing and interpreting the data - for example, reviewing the data, or helping to identify conclusions
- writing up the research - for example, co-authoring publications or helping with plain language summaries
- disseminating research outputs or findings - for example, helping to design a communications plan or co-present research findings
- putting findings or recommendations into practice - for example, working with key stakeholders to implement recommendations that change policy or practice, or sharing their role in the research
- developing future research funding and support applications - for example, as co-applicants, review panel members, or contributors to a future public involvement plan
During your project B
Tell us how people with lived experience will be involved during this project.
Include:
- the aims of your involvement activities
- how you will involve people
- how people with lived experience will guide your decision-making
- who you plan to involve (include approximate numbers)
- how you will reach them
- why these people are the appropriate people to involve
- how you plan to manage and coordinate the involvement activity, showing how this is proportionate to your budget and resources
- how you'll engage, support, reward, and provide feedback to those involved
- how you will capture the impact of their involvement, using appropriate tools
If you do not plan to involve people with lived experience in your project, explain why not.
5. How will you involve people with lived experience during this project?
Free text (max 500 words)
Equality, diversity and inclusion
Tell us how you will involve people with lived experience who will reflect the communities this research aims to benefit.
Include:
- how you plan to reach and involve the people with lived experience who reflect the communities your project seeks to benefit
- challenges to involving a diverse range of people, and how you will mitigate them
- barriers people with lived experience may face in taking part, and how you will mitigate them
- how you will make your involvement activities as accessible as possible
- how you might involve people who are often excluded from research in the field you are studying
6. How will you involve people with lived experience who reflect the communities this research aims to benefit?
Free text (max 500 words)