Patient story: Michael's research journey started with a WhatsApp message
Addressing the diversity challenge in clinical trials is a well-known issue for researchers. Certain populations have been shown to respond to the same medication differently.
Michael Reid, a Service Delivery Manager, had never thought about taking part in research. But a viral WhatsApp message prompted him to give-it-a-go.
“I have a friend who had prostate cancer”, Michael said. “He alerted me to the fact that, as a black man, once you get to 50 you need to take a little bit more care and get yourself checked.”
There are three main risk factors for getting prostate cancer - being black, over 50 and having it in the family.
Being in the at-risk category for developing the condition, Michael took notice of a viral message when it arrived in his WhatsApp inbox. The message was seeking volunteers to take part in PROSTAGRAM, a prostate cancer trial.
The PROSTAGRAM trial aims to find an imaging technique for prostate cancer, like mammograms for breast cancer. The trial, supported by the NIHR Clinical Research Network (CRN) North West London, needed to recruit at least 400 men.
"I'm not looking for opportunities to take part."
GP surgeries are ideal places to start recruitment. But attracting a diverse range of participants often proves difficult.
“I'm not looking for opportunities to take part”, Michael said. “I rarely go and see my doctor. Unless I'm very ill I'm not going to go and see him”.
This is a common approach to personal healthcare, meaning innovative techniques must be used to communicate directly with hard-to-reach groups. Researchers working on PROSTAGRAM did just that and shared a WhatsApp message to attract a representative group of participants.
WhatsApp proved to be a great success, with the recruitment target of 400 being met 19-months ahead of schedule.
Deciding to take part wasn’t an easy decision for Michael. “There were three tests”, Michael said. “The physical, blood tests and MRI scan.” It was the confined space of an MRI scan that put Micahel off. But the research team - based at Hammersmith Hospital, part of Imperial College Healthcare NHS Trust - reassured him they would make him as comfortable as possible. They recommended wearing a blindfold during the MRI scan.
“It was very accommodating”, Micahel said. “The radiologist was super professional and patient. I was hand-led in and out and talked through the whole process.” And the blindfold allowed him to imagine he was somewhere completely different. “I just pretended I was lying in bed. Without the blindfold, it’s just 25 minutes in a coffin as far as I’m concerned.”
Overcoming his fear of the MRI scan meant Michael could receive some very welcome news. “I got a letter about two weeks later to say that I had the all clear, so no follow-up needed.”
"It’s given me the confidence now to say that if I'm not feeling well, I'm gonna go see my doctor."
Michael knows from experience that for many, the outcome isn’t as positive. “I've lost people in my family due to prostate cancer. But with early intervention, it could allow doctors to do something about it”, he said.
This is why taking part in the PROSTAGRAM trial is important to Michael. “If you catch it early, you will save lives. So for me to be able to help facilitate the research that could potentially lead to this being adopted is the very reason I’m taking part.”
Getting involved has also led Michael to become more empowered to take care of his own health. “It’s given me the confidence now to say that if I'm not feeling well, I'm gonna go see my doctor and I'm gonna get a second opinion.”
It’s widely acknowledged that black, asian and minority ethnic (BAME) groups often don’t hear about opportunities to take part in research. But recruiting a representative group of participants ensures research results can improve healthcare for all patients in real-world settings. By using WhatsApp, the PROSTAGRAM trial proves that the right participants can be found if innovative recruitment techniques are used.
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