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 proposal (e.g. in the form of a letter of support or development of a lay summary), a research project which is about to start or an ongoing research project, please complete the following request form. Upon submission we will contact those patient research partners we feel might be able to help you with your project. It would be helpful if you can be as detailed as possible to help you get connected with the right patient research partner(s) as soon as possible!

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.

Please note

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.

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?
  • APPLICATIONS FOR RESEARCH FUNDING:
  • RESEARCH PROJECTS:
  • What is expected of researchers who involve patients in their project or grant proposal
    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. 3. 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:

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 of payment, short term casual contract). 

Patient research partners might be on benefits which are affected by any payments (regular or one-off) and you should advice 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. https://www.nihr.ac.uk/documents/payment-guidance-for-members-of-the-public-considering-involvement-in-research/27372) 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 Healthtalk.org and the Researchers guide to PPI commissioned by the NIHR Oxford Biomedical Research Centre.

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