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Case study: John Reilly - Championing research

“It‘s really important to get lots of people and patients involved."

John Reilly has officially retired but continues to contribute to education and research.

Having spent much of his life in academia, John taught in Uganda, before moving into management and administration at the University of Kent. He has been involved with numerous projects supporting education, at home, in Europe and in Africa, including currently helping with curriculum development in Ghana and Tanzania.

As well as helping to set up Master's and doctoral programmes, looking at problem-based learning in Moldova, which led to a book on Populism and the Higher Education curriculum, and contributing to a book on perspectives on entrepreneurship, John still finds time to promote research, as one of the CRN North Thames Research Champions.

With his academic background, John had always been aware of research but had never previously been involved in research related to health. However, when he started to suffer from severe arthritis in his ankle, he began to investigate treatment options.

As his condition worsened, John discussed the choices with his GP and was eventually referred to the Royal National Orthopaedic Hospital NHS Trust (RNOH). Here he was told about a clinical research trial, ’TARVA’, and he decided to get involved.

The TARVA trial was enrolling patients with end-stage ankle osteoarthritis and comparing treatment with arthrodesis (fusing of the joint), to replacing the joint altogether.  

John was randomly allocated to the arthrodesis arm of the trial and has been pleased with the results. The trial has since closed to new patients but had given John a real taste for clinical research. He says:

“I was delighted to be involved in a research trial, I felt privileged and lucky. 

“Research is absolutely fundamental.

As we have seen most dramatically with the new Covid vaccines great breakthroughs can be achieved in a short space of time. Not all research produces results so quickly but over time it can be transformative.”

As part of the clinical trial, John was asked to complete regular questionnaires, which asked him to evaluate the impact of the surgery and his experience as a research participant.

“At the end of one of the questionnaires was a reference to becoming a Research Champion,” he explains. “The leaflet said to get in touch with Christine Menzies at North Thames if you were interested, so I did.” 

After meeting with Christine, the CRN North Thames Patient and Public Involvement Manager, and discussing what would be involved, John decided he would like to take on the role and is now an active Research Champion (RC) for CRN North Thames. 

As well as attending regular meetings with the other RCs, John gets involved with trials to provide patient feedback. His input and experience provide a participant’s perspective which he hopes will help to improve the experience for patients who take part. John explains:

“It‘s really important to get lots of people and patients involved. We all work in bubbles and researchers and medical staff are no exception. Feedback and input from the ‘customers’ can provide perspectives that could be overlooked. 

“It’s a two-way thing,” he adds. “It provides a better experience and understanding for patients and helps the researchers.”

John also takes part in focus groups and is currently included in a basic research project which is looking at the possibility of micro-capsule injections to release pain relief into a joint over an extended period. It is early days, but John finds it absorbing and says that he finds it “humbling”, as he realises the complexity and challenges researchers face.

He sees the role of RCs as not just to encourage patients, but to get more clinicians involved in research:

“Not enough clinicians are involved in research. It would make their interactions with patients so much more fulfilling. Not all clinicians realise how exciting, interesting and rewarding it is to be involved.”

CRN North Thames has 21 RCs but is looking for more and John explains why you might want to come on board.

“It can give you a new lease of life and purpose.

"You may have a general lay person’s view of research but getting involved, you learn so much more. It is fascinating and gives you privileged insights into medicine and healthcare research.

“It is enriching; you are involved and hopefully making a contribution to improved health care whilst meeting a new circle of committed and interesting people. Above all you go on learning and that is always fulfilling.”

 

If you would like to find out more about getting involved in research, visit the NIHR pages on how to BePartOfResearch. (link to be added)

If you would be interested in getting involved as a Research Champion, please e mail our North Thames Patient and Public Involvement and Engagement Manager, Christine Menzies.