In this blog, Sophie Staniszewska and Richard Stephens, Editors-in-Chief of Research Involvement and Engagement highlight the importance of patient and public involvement in trials on International Clinical Trials Day.
Sophie Staniszewska & Richard Stephens 18 May 2020
On 20th May 2020 we mark International Clinical Trials Day, an opportunity to recognize the people who carry out clinical trials and thank them for their efforts in improving public health. This of course includes the patients who participate in those trials, without whom the trials simply would not happen. It also includes the patient and public contributors who can shape the trials, helping to ensure they address questions of importance and relevance for patients, as well as being practical and feasible to run.
Internationally, public involvement is becoming embedded within the design and conduct of trials and is increasingly seen as usual practice. This reflects the many ethical, moral and political arguments for involving patients and members of the public in research, as well as the argument that such involvement can enhance the quality of the research (Staniszewska et al., 2018). Ensuring that the outcomes a trial measures are important to patients can help to develop the relevance of a trial, and so enhance the potential health benefits it will create for patients by ensuring the intervention is evaluated against what really matters for patients. Public involvement in trials can also help retention of participants, as recruitment strategies and the design of trials aligns with the reality of peoples’ lives, helping to ensure that participation is desired and feasible, and promoting the concept that a clinical trial is a treatment option for patients and is intended to benefit patients, whether now or in the future.
In developing our international approach to public involvement in trials, we view involvement as an area of evidence-based social practice. This means that when we plan and undertake public involvement in trials, we should draw on evidence of what works, for whom, why and in what context.