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Case study: International Clinical Trials Day 2022: A patient perspective on taking part in clinical research

To mark International Clinical Trials Day, CRN Kent, Surrey and Sussex met up with research-active patient and NIHR TrialBlazer, Robert Lane, to find out what motivates him to be part of research

Some years ago, Robert Lane was on a flight from the UK to India and was feeling very nervous. He had been invited to present a paper at an International Water Conference in Delhi. The reason for his nerves? He knew very little about water infrastructure, and even less about how to deliver a paper at an international conference.

“I thought: ‘What have I let myself in for?’ I had been out in India previously, volunteering on a development project, arranged through my local church. While I was out there, I met up with the local representative of the charity WaterAid, and they convinced me to present at the conference.

“I had no experience, or particular expertise, but fortunately, I knew people who did. I managed to put together the paper, and we jointly presented it to the conference. It went quite well in the end.”

When he says “quite well”, what Robert means is that his presentation yielded hugely positive results. His presentation attracted the attention of a delegate from the Foreign & Commonwealth Office, who subsequently visited the project and was impressed enough to arrange additional funding for it.

The point of this story is that, had Robert not volunteered to take a leap in the dark, that village’s water infrastructure project might well have missed out on critical funding.

“It was the worst volunteering experience I had ever had, but it was worth it.”

This tells you everything you need to know about Robert’s attitude to living with prostate cancer. In 2015 he was given two years to live, and now he is “five years into the positive”, thanks in a large part to his positive outlook, and his proactive attitude towards clinical research.

And it says a lot that a man who has taken part in several clinical trials in the last few years, ranks a public speaking engagement as his worst volunteering experience.

“I have had some wonderful experiences working on studies,” he says. “The Interval study had me working in the gym for three days a week over a period of two years.

“It was a very well-run study, and had a great social aspect. We would meet up at the gym, and have coffee afterwards. And although it has been a couple of years since the study ended, we still keep in touch.”

Fighting fit

The INTense ExeRcise for surviVAL Among Men With Metastatic Prostate Cancer (INTERVAL - GAP4) trial investigated whether supervised high intensity aerobic and resistance training allowed patients to live longer and reduce disease progression in men with prostate cancer. As part of the trial, Robert was given an individual training programme.

“I had given up doing exercise at that point, but this trial gave me the confidence to exercise, increased my fitness, and gave me more energy,” says Robert.

Taking part in this trial had more than just a physical impact. “Going to the gym three times a week gets you into a nice routine. You meet and interact with people, and that really helps your frame of mind,” he says. Robert has found that other trials had a similarly positive impact.

“Every time I have been in for blood tests or a scan, everyone has been so friendly, and that has been very encouraging” he says. “It really helps you to feel connected with people.

“I feel like everyone in the hospital knows me - I must have met half of them by now - quite a few of them have seen me with my shirt off!”

It is absolutely essential that people like Robert feel comfortable in the clinical environment. There is clearly a close relationship between ward staff and their patients, and that is essential for the success of studies. For Robert, this relationship was most important at moments of disappointment.

“On a couple of occasions I have found myself on the control arm of a study,” he says. “I found it very difficult, because the consultant told me how beneficial they expected the treatment to be for me, and that I was an ideal candidate for the trial. They said that after the randomization, I wasn’t going to be given the treatment after all. It hit me really hard. I was so disappointed.”

It was not only Robert who felt that disappointment. He recalls that the staff on the ward were very empathetic and understanding. But they helped him to realise that the true value of research is not in his experience as a patient, but in the potential benefits for patients in the future.

“Even on the control arm of a study, the care you get is excellent,” he says. “You receive all the same monitoring and contact with the researchers, and that in itself is a benefit.

“And unless you have got people on the control arm, the research isn't valid, so it has a very important role to play.

“As a participant, I see the true value of research,” he says. “Most importantly, being part of research means you are helping others. You are part of a team that is investigating and discovering new treatments, which could help other people for generations to come.

“Being part of research also helps you to better understand your own diagnosis. A better understanding of what is happening to you can really improve your own mentality and attitude to life.

“I have come to terms with my diagnosis, and with what is happening to me. If what I am going through now can result in making life better for other people in the future, then I am very happy.”