Patients are crucial to research in the NHS – hundreds of thousands take part in research studies each year and we all benefit from the improvements to care and treatment they bring.
In recent years, researchers have increasingly worked to involve patients and the public in helping to decide on priorities for clinical trials so that it’s relevant to them and their conditions.
But so far, not much is known about people’s experiences while they’re taking part in research. Now a new study, led by The University of Manchester’s Professor Peter Bower and sponsored by Salford Royal, will look at how researchers can collect feedback from trial participants and then design tools so that the feedback can be used to improve how trials are run.
The £150,000 project is funded by the National Institute for Health Research’s Research for Patient Benefit programme and will start in September 2017.
Ailsa Donnelly is a patient who has participated in several trials and is a co-applicant for the study. She said: “It’s very important that we look at clinical trials through the eyes and experiences of the patients who are taking part. Their feedback, both good and bad, can then be used to improve the way trials are run in the future.
“If people think that the study they’ve taken part in was well-run and they were treated with respect and consideration, they are more likely to get involved again and encourage others to participate too.”
Professor Bower wants the PACT (Patient-centred trials) project to identify the best ways to capture patients’ experience and then to create a tool that trials teams can use. That tool will then be tried out in a number of studies, together involving at least 500 patients, to assess if it works well.
He said: “We want to know if patients enjoy taking part in research and if they don’t enjoy it, what we need to do to improve their experience. It’s important that people feel valued and that taking part isn’t too much of a burden.
“Many aspects of health care have been improved by routinely seeking feedback from patients. A good example would be the GP Patient Survey, which is used by millions of patients and gives us a really good idea of how practices are performing. We’ve made great strides in involving patients in research at the outset to shape what we do. But so far we haven’t looked so closely at their experience once the research is up and running. Although each person will experience a study differently, we think gathering feedback will help us to understand overall trends.”
The project team also includes Dr Caroline Sanders from The University of Manchester, Professor Bridget Young from the University of Liverpool, Dr Katrina Turner from the University of Bristol and Dr Katie Gillies from the University of Aberdeen. Dr Claire Planner (who leads on patient and public involvement on the bid) was funded by the Medical Research Council Hubs for Trials Methodology Research.