‘Improving trials by improving trials for patients’ was a meeting organised for clinicians, trialists, researchers and patients to hear the latest research on optimising clinical trials and more patient-centric methodology.
Held at the Liverpool Medical Institution and hosted by the MRC North West Hub for Trials Methodology Research, the meeting showcased a wealth of innovative approaches.
The keynote came from Professor Kay Dickersin, Director of the Centre for Clinical Trials and Director of the US Cochrane Centre, highlighting the need for members of the public to be involved in trials in an appropriate role. Whether this is as a patient, ‘service user’, ‘consumer advocate’, or advisor, the industry must consider what education is necessary to facilitate these different perspectives and ensure that scientists also understand those perspectives.
Peter Bower, Professor of Health Sciences Research at The University of Manchester and the MRC North West Hub, presented the different attempts to conduct meta-research; identifying how recruitment to trials can be optimised, how better patient information can be developed, and the efforts to produce evidence around the fact that patient involvement in trial design and execution improves that research.
He also called for a better understanding of why patients do and do not choose to take part in clinical research.
Other talks covered a range of fascinating issues, from new approaches to deferred consent in paediatric emergency clinical trials to the EPIC study, and how to practically implement good Patient and Public Information (PPI).
Speakers suggested four key points: to ensure there are specific goals and plans for the inclusion of PPI in a trial, ‘responsive PPI’ – or groups to give advice as and when needed, PPI to be implemented before funding and during dissemination, and for the relationship between researchers and PPI to be prioritised.
There are also lessons to learn from the world of technology, where user accessibility, personalisation, and feedback are taken as standard. How can we incorporate these elements into the trial process?
These are important considerations, and the industry has a long way to go before it can claim to be truly patient-centric. A shift in attitudes, as well as greater steps to involve the patient voice, will be needed. But it is encouraging to see this need recognised, and that the work to meet this has begun.