Stories from research partners

Our research partners take great pride in contributing to our rheumatology research. Here are two stories which give an real insight into what its like to be a research partner here at the University of Birmingham.

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: 

RAPIDRheumatoid 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 

DELAYDelays 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.

Sam Patel ''The impact of RA and being a patient research partner''.

About Sam

Sam Patel is a patient who has rheumatoid arthritis (RA). He helps out with the Rheumatology Research Patient Partnership (R2P2) group and regularly aids the research process. He is now retired due to ill health but previously he has had a career in nursing, working with people with learning disabilities as well as managing care homes later on in his working life.

About his condition

He first started noticing the onset of symptoms when he found he was fine driving to work, but then as the day went on swelling increased in his joints and it meant that he couldn’t drive back home. He visited the hospital but they did not diagnose him with RA as his symptoms were not present at that time. When he next had a flare of his symptoms he took photos using his phone to show the doctor at his next appointment and this then lead to a diagnosis. He also has diabetes and spinal disease which complicates medication and treatment for him, and he has had to try a variety of different drugs to try and find ones that work for him.

How RA impacted him

As Sam’s condition progressed, he reluctantly did have to give up work at a relatively early age and this was hard for him and caused a lot of negative emotions. He used to do quite a lot of DIY around the house and due to RA Sam had to limit that as it became too difficult for him to complete. Many other aspects of Sam’s life are affected by his RA, for example when buying new clothes he needs to think about choosing styles that won’t be difficult for him to put on.

His role as a patient research partner

Sam has helped design user friendly surveys for patients with RA and their family members in order to understand people’s views about RA, and how likely people are to pass on information to their immediate family about the risk of them developing RA in the future. This also links to Sam helping ensure the information about research studies that is given to people taking part in research is clear and easily understood so it is suitable for all. Similar to this he also makes sure that summaries of research plans and findings are clear for patients and the public; he helps ensure that there isn’t too much technical language.  He also supports applications for research funding, this is vital as without the support of the patient research partners funding applications would be less likely to be successful and research would not advance.

Why he became a patient partner

There are many reasons why he became a patient partner and one reason is the social aspect. Through the partnership Sam gets to meet many other people with his condition in some of the research activities that he participates in.  Another reason is that Sam enjoys helping out, and feels that his contribution to the research process is valued. He gets to hear about the progress of research projects and gets updated on how his involvement has helped.

He would strongly encourage others to become a patient research partner as patients can make a valuable contribution to rheumatology research, and can enjoy interacting both with researchers and with others who have RA.  It can be extremely helpful to share experiences and support each other. It is important that a diverse group of patients are involved in research as there are many different viewpoints.