Patient story: Nottingham research participant uses experience to put patients at the forefront of research
Meet Michael, a research patient who is now using his experience and expertise to help improve patient and public involvement in research...
Michael’s research journey began after falling ill as a student in Oxford. He was ill for over two years, suffering from fatigue and increasing pain and a number of hospital tests under the care of Professor Sir David Weatherall showed abnormalities but nothing clear cut. Eventually he was sent for a CT scan: new technology at the time, and he had to travel 80 miles to Bristol, the nearest hospital with a scanner. The scan revealed a large abdominal mass which was inoperable, and further tests showed to be a malignant tumour.
Severe radiotherapy followed by chemotherapy took place over an 18-month period. Against the odds, Michael came through this and recovered and finish his PhD before beginning a career at Boots in Nottingham. This would put him onto a career trajectory that would see Michael manage the production of ibuprofen at Boots, before moving into forensic science: joining the Home Office to manage the Birmingham forensic laboratory and eventually managing the National DNA Database.
However, the intensity of the therapy Michael received has resulted in a number of long-term health effects. The first of these was stomach damage caused by the radiotherapy, and led to a gastric carcinoma being diagnosed. To deal with this, Michael underwent surgery and two-thirds of his stomach was removed: another life-changing event. Further late effects of the chemotherapy and radiotherapy have emerged over the years since, including damage to the kidneys, and to the cardiovascular, hearing and balance and nerve systems. Michael was referred to Professor Chris Hawkey, a gastroenterologist at Nottingham when the stomach problems arose. However, Professor Hawkey was working with Professor Weatherall in Oxford when Michael was ill originally and knew of Michael and the treatment he had received. Because of this connection, he has understood the late effects symptoms as they arose. Professor Hawkey has been a vital part of Michael's overall care, signposting him to other specialists as necessary.
The cumulative impact of the late effects was starting to impact more and more on Michael's working life and nine years ago, he was offered early retirement on the grounds of ill health. Since then, he has become increasingly involved in working with health professionals to develop research and ensure that the needs of patients are put at the forefront of trials. This kind of input is called Patient and Public Involvement (PPI).
Michael's PPI activities have included becoming part of Patient Advisory Groups in gastroenterology, hearing and musculoskeletal research at Nottingham. The input includes acting as a lay assessor, reviewing study documents and he has also been a lay co-applicant on research studies. Michael has also drawn on his own experience to highlight the importance of research to the public through media appearances. He has also been involved in an initiative by Macmillan Cancer Support across Nottinghamshire, which has seen him providing input into over 20 projects.
As a result of his heavy involvement and impact, Michael was last year involved in delivering a module on PPI in clinical research to students at Nottingham’s School of Medicine. This included delivering presentations, overseeing workshops, and marking written submissions from the students.
At present, Michael is working closely with the PPI team at Nottingham University Hospitals to explore ways to increase the profile of research and related PPI activities across the organisation. One of the recent late effects form Michael's Oxford treatment has been damage to his hearing and balance, and he is now working with Professor David Baguley to investigate what can be done to mitigate the risk of hearing loss for patients undergoing chemotherapy in the future..
Michael explains that his motivation to take part in research both as a participant and by helping to shape studies is a desire to give something back. “For me, medical research is in many ways a logical extension of my career,” he says. “Research and medical science has played a large part in my life, as a patient and during my career, and I want to do everything I can to make research even better for people taking part.”
Michael also stresses the social side of research. “It’s an opportunity to meet people who have shared experiences, to learn from each other and use our collective experience to make a difference,” he explains. “My involvement has given me the chance to meet some fascinating people – both patients and professionals – and it’s inspiring to see their desire to make a difference.”
His top tip for professionals? “Look after your patient and public representatives- they have so much to offer, and if you treat them well and develop relationships with them you can unlock so much insight that will help encourage even more people to be part of research.”