Stories from research partners

John Rowland "Why I am a Patient Research Partner and what I do"

Background

I have had Rheumatoid Arthritis (RA) for over 20 years and help run a Patient Support Group at City Hospital in Birmingham. We meet monthly.

Now there are many rheumatology researchers based around Birmingham University (Medical School) and the various hospitals and we have had extremely interesting talks from some of them on their particular aspects of research and, moving forward, how patients could get involved.

I hasten to add that I know dangerously little about the medical side of RA but considered that I might be of some use working with the clinicians helping them to spread information and advice to others who have the disease and those who may develop symptoms.

So those of us who had a bit of time to spare readily took up the offer of a “partnership” between us the patients and the clinical researchers. That is how it began.

Don’t lose interest..read on, it really is very worthwhile

So what do we do?

The researchers have specific projects and questions that need answering about not just RA but other comparable diseases. Many of these questions involve interaction with the public at large and the preparation and disbursement of surveys and questionnaires. Patient Research Partners (PRPs) meet with the researchers (not the public) on a regular say quarterly basis and help prepare those documents and perhaps help to shape that research a little. This website for example has some input from the PRPs.

Two of the on-going projects with which I am involved:

RAPID; Rheumatoid Arthritis the Public InformeD; well this does what it says on the tin. It is vital that we bring a lot more awareness to as many people as we can, especially but not exclusively, to the more vulnerable groups in our society. Please see the RAPID website for more information 

DELAY; Delays in Evaluating Arthritis earlY. Why do people delay going to get treatment or help when they may be suffering from these diseases? Do they know they have them? Please see the DELAY website for more information

Being a Research Partner serves two purposes. Firstly it helps the researchers by perhaps giving them a wider perspective of their projects with more minds looking at the work from differing angles. This has worked I believe particularly well in both the RAPID and DELAY research in the preparation of surveys etc as mentioned above and the RAPID website. Secondly it has brought us, patients and clinicians, closer together and there is certainly a feeling, if you will pardon the cliché, of giving something back to the community in an enjoyable way