Involving patients and the public in medical research
User Involvement (often also called patient and public involvement) is central to NIHR activity and endorsed as a key priority for our BRC as a whole.
There is evidence from both researchers and users that both groups have benefited from working together on research studies, learning new skills and knowledge.
If you would like to discuss the potential for user involvement in your research or are not sure how to start, please contact Sophie Auckland, BRC User Involvement Manager for more information.
In this section, you will find more information about the meaning of user involvement, how to implement it in your research and links to advice and resources that can help you.
Share with us what you're doing
We would like to share information about user involvement activities on this site. If you have any examples, please contact Sophie Auckland.
Frequently asked questions
1. What does User Involvement mean?
2. How is user involvement relevant to my research?
3. How do I recruit users and keep them involved?
4. Do you need ethics approval to involve users in research?
5. Is it more time consuming to involve users?
6. Does it cost money to involve users?
7. Where can I go for further information?
1. What does User Involvement mean?
The term user involvement is used to describe "how patients and the public can work in partnership with researchers in many different settings and in variable ways throughout the research process." Macmillan Cancer Support: Getting involved and influencing research.
User refers to a members of the public or lay person for example a patient or family member/ carer.
See the BRC guidance document Involving patients and the public in medical research (PDF 755Kb) for further details.
2. How is user involvement relevant to my research?
Research that aims to benefit patients should involve users as early as possible in the research design process. This is for a variety of reasons:
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Research ethics. Does the research idea raise ethical issues that may mean patients will not participate or make use of the intervention? By discussing issues with users prior to developing your research proposal you may find ways to address participants' concerns. Many researchers are still completing the user involvement section of the ethics application incorrectly. Read the
report from INVOLVE and NRES to find out more.
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Getting it right. Involving users in the development of the research can lead to more relevant research questions. Users can inform the design of the research. For example, is a questionnaire the best way of collecting data from elderly people? What might be more appropriate?
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Communicating your research. Users can help you communicate your research to other patients and the public by advising alternative places to disseminate reports and by checking that the language used is understandable.
3. How do I find members of the public and keep them involved?
This is a common issue. It is important to be clear about the role you want users to do and to support them.
Further information can be found in the BRC Guidance Document Recruiting and retaining people for user involvement (PDF 908Kb).
More information, templates for user role descriptions and user advisory groups can be found on the user involvement resources page.
4. Do you need ethics approval to involve users in research?
You do not need ethical approval to involve users as advisors for your research, for example if they help develop a questionnaire or patient information sheets.
However, if users are involved in undertaking the research study, for example by having contact with patients and/or their data, the study will need ethics approval as any study would which involves patients' data. This requirement is based on the fact that patient data is involved and not the fact that users are involved in undertaking the research. If users are to have contact with patients, or will be accessing personal data, they will require honorary contracts with the organisation.
For further clarification see Patient and public involvement in research and research ethics committee review (PDF 118Kb) by INVOLVE and NRES.
5. Is it more time consuming to involve users?
It does take time to plan user involvement and to recruit and support users. However, if this is built in to your research plan from the start then it will not seem like additional work, but part of the overall research project.
For guidance on incorporating user involvement in your research design you can contact the Research Design Service London User Involvement Officer, Carol Porteous.
You can get further assistance on recruiting users by contact Sophie Auckland, BRC User Involvement Manager.
6. Does it cost money to involve users?
Yes. You will need to budget for users' travel to attend meetings as well as the staff resources required to support them. You may also want to help support users with childcare or carer costs and to acknowledge their input with vouchers or social events.
Again this should be considered at the beginning of your research proposal so costs are accounted for in your grant application.
User involvement may help you use resources more effectively for example by advising on the appropriate places to advertise for participants.
7. Where can I go for further information?
Read our (PDF) step-by-step user involvement guide to involving users in the research process
The NIHR site provides an overview of NHS policy on user involvement and resources to help researchers.
Research Design Service London for help designing research with user involvement built in or you can contact Carol Porteous, User Involvement Officer on 020 7848 6763.
Research Design Service North West has good guidance on starting user involvement in your research and downloadable tools.
INVOLVE for resources and evaluations of previous studies.
James Lind Alliance for information about patient research priorities and resources.
Patient Partnering in Research is a European collaboration of clinical researchers, patient organisations and pharmaceutical companies with some good practice examples of involvement.
People In Research is a website where you can look for patients to get involved in you research and advertise your work.