Involving patient research partners in your research

Research which reflects the needs and views of the patients can make the questions asked by researchers more relevant and aligned with patients’ needs and priorities. Therefore, the Rheumatology Research Group in Birmingham believes that it is vital for patients to be involved in their research. 

What do members of R2P2 do?

Rather than the use of people as the ‘subjects’ of research, active involvement of patients in R2P2 can take the form of patient consultation and collaboration. People involved in R2P2 are usually enthusiastic individuals able to engage with researchers and healthcare professionals to benefit research studies. The 3D’s represent the types of activities patient research partners may do to promote and enhance research in Birmingham.

  1. The design of research (including establishing research priorities and informing funding applications)
  2. The delivery of research (including the design and development of measures, sitting on steering committees, promoting strategies to enhance informed consent and patient understanding of research)
  3. The dissemination of research (including the development of lay summaries, organisation of event to promote research and website design)

Members of R2P2 may work with a variety of professionals to inform research studies and research priorities. Researchers, Clinicians, research funders (including charities and pharmaceutical representatives) and other members of the research community may engage with members of R2P2 in the interests of enhancing research studies taking place in Birmingham.

How do I get in touch with R2P2 patient research partners?

If you need the help of patient research partner(s) with a grant or fellowship proposal, a research project which is about to start or an ongoing research project, you can get in touch with us using the request form below. Upon submission we will contact those patient research partners we feel might be able to help you with your project and put them in touch with you. It would be helpful if you can be as detailed as possible on the form to help you get connected with the right patient research partner(s) as soon as possible!

Important: Patient research partners do get involved in research alongside their normal activities and jobs, so please leave plenty of time between making the request for support and any deadlines you might have for tasks to be done. 

It is further important to note that we welcome requests from all members of the Rheumatology Research Group (RRG) and their collaborators. If you are not a member of the RRG but would like to get input, please contact one of our Principal Investigators. As a rule, we can only support research where a member of the RRG is a point of contact for the patient research partners.

To find information about how the University uses your data, visit our Privacy Policy.

  • Please complete the following details about you and your (proposed) research project.
  • Are you a member of the Rheumatology Research Group in the Institute of Inflammation and Ageing?
  • What kind of task or tasks would you like the patient research partners to help you with?
  • Will the patient research partners associated with your project or proposal need any specific training?
  • Some resources for PPI partners are available on the Birmingham BRC website.
  • What is expected of researchers who involve patients in their project or grant proposal
  • For best practice around patient and public involvement, please see the NIHR standards for PPI. There are also guidelines from EULAR which are more tailored towards involvement in rheumatology research.
  • If you have not involved patient research partners before, you may benefit from the training and advice available for researchers through the Birmingham BRC: Involving patients and the public in your research
  • Specific expectations and things to consider when involving R2P2 patient research partners:
  • 1. Time
    Please be aware that patient research partners may have full time jobs, caring responsibilities, or other commitments that mean they are not always able to provide input to your project at short notice. Please make sure that you leave plenty of time before any deadlines when asking for input. All patient involvement is voluntary. Patient partners may choose to stop their involvement in some, or all activities you require at any time.
  • 2. Activities
    Similarly, patient research partners are free to pick and choose which activities they get involved in. They may for example be able to help you with a lay summary but might not want to or be able to attend a (online) research meeting. Please respect these personal preferences. It is often helpful to involve more than one patient research partner to allow for flexibility around levels of involvement.
  • 3. Make it meaningful
    Asking precise, tailored questions facilitates meaningful input from patient research partners. Ensure that you provide sufficient and accessible guidance and information to enable patients to make a meaningful contribution to your research plans and activities.
  • 4. GDPR
    We will provide you with contact details of patient research partners who have indicated they are happy to provide advice. Please make sure that you treat their personal details confidentially and hold any details securely in line with GDPR guidelines.
  • Please indicate here that you understand your responsibilities about GDPR:
  • 5. Feedback
    It is essential to provide feedback to patient partners about the impact of their involvement and the progress of the research. For example, let them know whether the grant application they wrote a supporting statement for was successful, or describe the findings of the research project they have supported.
  • 6. Evaluation of PPI
    It is important to think about how you plan to evaluate PPI processes and activities throughout your project. What PPI activities took place, what was the impact of PPI in your project, what went well/not so well? It is useful to involve patient partners in this process. Keeping a contemporaneous record of PPI activities and impact will help you and others learn from the experience but also help you when writing about PPI in reports, grant applications and journal articles. Many funders, such as the NIHR expect detailed plans for monitoring PPI and impact in grant applications. Some guidance can be found here: PPI (Patient and Public Involvement) resources for applicants to NIHR research programmes.
  • 7. Payment
    It is good practice to offer compensation to patient research partners for their time, and patient involvement should be costed in to grant applications. Approximately £25 (or equivalent in vouchers) per hour is recommended. Any expenses incurred by patient partners should be refunded. Please check the current NIHR research guidelines regarding payment: NIHR payment guidance for researchers and professionals. We have also outlined payment related issues for patient research partners on our website.

Information about payment for PRPs

As outlined in the request form, it is expected that you set aside money to pay for the involvement of patient research partners in your research. At a minimum you are expected to pay for any travel costs and subsistence. If at all possible within the remits of your grant it is good practice to also pay them for their time and effort. It might also help you to recruit and retain patient research partners if there is some compensation for them. It is something you should cost into your grant application. The NIHR have excellent resources for both researchers and the public. How you go about paying your patient research partner depends on the circumstances of the individual patient research partner and also on the circumstances of your grant or funds from which you wish to pay them (e.g. cash, vouchers, one-off payment, short-term casual contract). The NIHR has just released some new guidance about easier payment to PRPS. The NIHR has also got specific guidance around tax and employment status for patient research partners which you might find helpful: Payment for public involvement in health and care research: a guide for organisations on employment status and tax.

Patient research partners might be on benefits which are affected by any payments (regular or one-off) and you should advise your patient research partners that tax and benefits might be affected by payments and that it is their responsibility to check. Do provide them with the relevant information either by giving them relevant links (e.g. or by printing out the relevant materials for them. You might be asked to write a letter to the benefits office explaining the situation. If this is the case, please contact the R2P2 coordinators for a pro format letter.

Importance of involving patients in research: information from Versus Arthritis

Versus Arthritis have developed a very useful guide about patient and public involvement specifically for researchers. This is a very useful overview of all the ins and outs of involving patients and other members of the public in your research and we strongly recommend you read this as preparation to involving R2P2 members in your research application and/or research project and not only if you are applying to ARUK or are in receipt of one of their grants! More information to be found at Involving People with Arthritis.

Further sources of information on patient and public involvement across disease areas

For further information on patient and public involvement in research across disease areas, please see the Patient and public involvement in research page from and the Researchers guide to PPI commissioned by the NIHR Oxford Biomedical Research Centre.

The NIHR further offers comprehensive briefing notes for researchers on PPI.