At a time when patient centricity is at the centre of study planning for pharma and biotech, an expert has called on sponsors to do more to support patients in the event of clinical trial failure.
During a panel at CHI’s 8th Annual SCOPE Europe: Summit for Clinical Ops Executives (SCOPE) conference in Barcelona, Bob Stevens, CEO of the MPS Society, a patient support charity, says that sponsors should take more responsibility to support patients when a trial fails.
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“When clinical trials are shut down, who is there picking up the pieces?” Stevens questions. “Pharma has left the building. It’s patient organisations. We are having to help them get used to what a new normal is. We need to design failure into clinical trials and consider what that means for people who have been brave enough to participate in those trials. Just because it fails, the responsibility doesn’t end there. It needs to change.”
Fellow panellist Toni Mathieson, CEO of Niemann-Pick UK, a patient support charity, said that her organisation and the patients supported by it once discovered a trial they had participated in had failed through Facebook.
“That was difficult for the patient community to deal with. These are people who had dedicated three or four years of their lives to a clinical trial that they believed in to learn that it had failed online,” Mathieson said.
She added that sponsors need to think of the full perspective when it comes to embedding the patient experience into research, not only in the protocol planning stage.
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By GlobalData“We have been involved in so many trials where patients give information, have survey after survey, interview after interview, and the information is never reported back to them. When you are talking about how a disease affects your life or your child’s life, that can be incredibly difficult to do, and yet patients are expected to do that time and time again,” Mathieson continued.
The panellists went on to say there should also be more focus on preparing payments in advance to assist patients in expenses incurred as a result of their trial participation.
“It’s too slow and patients can’t manage,” says Mathieson, with Stevens adding that this issue is the direct reason he set up MPS Society, adding that it can even take his company up to 90 days to receive reimbursement on expenses incurred by a patient in a trial.
