Being an R2P2 research partner

Being an R2P2 Research PartnerHow R2P2 works

R2P2 is co-ordinated by steering panel of patients, researchers and members of the public. If you’d like to talk to one of the R2P2 patient representatives please contact Becky Birch who will arrange for a patient representative to call you back.

R2P2 is predominately facilitated by email but other forms of communication and discussion are used. We will produce a 6 monthly newsletter to keep you updated on the studies involving patient research partners.

If you are involved in a specific study there will usually be a few meetings to attend. During these meetings you’ll have the opportunity to meet the research team, other patient research partners and familiarise yourself with the research study.

There will also be an annual patient research partner event where you’ll have the opportunity to meet other patient research partners working on other studies.

What makes a good patient research partner?...

People involved with our research projects as research partners need to be enthusiastic and able to engage with both researchers, members of the general public and (fellow) patients. You don’t have to have Rheumatoid Arthritis, Sjögren’s Syndrome or any other long-term illness. You should however be an able communicator, have an interest in contributing to the research process, learning about the research and have sufficient time to spare. On this page, you will find more information on the kinds of tasks you might be asked to do, the time involved and payment of out of pocket expenses. If you are interested to learn more, please contact Dr Marie Falahee, Dr Gwenda Simons or Becky Birch

What kind of tasks might I be asked to do?...

Obviously this will vary from project to project and we encourage you to have a look at the information available for each project you think you might be interested in, but patient and public involvement will support for instance:

  • Recruitment and consent - you will contribute to the development of participant information sheets and where possible will act as a patient contact for the project
  •  Interpretation of findings – through the development of recommendations for practice and patient information leaflets (top-tip leaflets).
  • Dissemination of the findings through patient networks such as the National Rheumatoid Arthritis Society or charities to support patients with Sjögren’s Syndrome.
  • Supporting the development of information for the R2P2 website

How much time will be involved?...

This varies from task to task and from project to project. Attending a meeting might take 2-3 hours (plus travel time), and meetings might take place 3-4 times a year. Providing feedback on a participant information sheet on the other hand might take an hour and can be done via email. When a researcher invites you to be involved with a project or a certain task which they think might be of interest to you, they will generally give you an indication of how long they think it will take.

Out of pocket expenses and other payments...

We hope that being involved in research and having an important role in its development, execution and dissemination is a rewarding and exciting learning opportunity for you. We don’t want you to be out of pocket when you attend one of the project meetings or engage in other activities and in general, reimbursement for members’ involvement is intended to meet their out of pocket expenses (including travel costs) as well as reflecting the time and effort for involvement. However, since different projects are funded through different sources, the rate at which panel members can be reimbursed will vary from project to project. Where possible we will give you an indication of what payments & reimbursements to expect in our initial invitation to take part in the project. The researcher, who is responsible for the project you are involved in or would like to be involved in, should also be able to tell you more before you get engaged in any activities.

It is important for you to know that payments might lead to a reduction in certain benefits and you might be liable to pay tax. As this is completely depended on your personal situation, it is your own responsibility to check if this is the case.

INVOLVE, a national advisory group about public involvement in NHS, public health and social care research, have excellent resources for both researchers and the public. Specific information about payment can be found here

The coordinators at R2P2 or the researcher(s) in charge of your project will of course help you wherever possible and can give you print outs or booklets of the relevant information as well.  

Helpful resource for patient research partners...

If you are new to being a patient research partner or even if you are an old-hand, you might find the following online programme useful:

The European Patient Ambassador Programme, a free patient online self-learning tool for people affected by chronic conditions, covering modules ranging from becoming better informed, how research works and how to get involved to attending healthcare conferences.

It’s a free resource that many patients already find useful.