When INVOLVE published its guidance on public involvement in clinical trials in March 2012 (see above), the Medical Research Council Clinical Trials Unit (MRC CTU) had already done some work to ensure that patients, carers and community members have positive impacts on the quality and usefulness of our research.
At an organisational level, we had:
Many of our researchers had also worked in partnership with patients, carers and community members to ensure that individual trials and other studies reflected the needs and priorities of patients. For example:
Our experience meant that we were asked by INVOLVE to help to write their guidance on public involvement in clinical trials (see above). Working on the guidance enabled us to learn more about PPI in other trials units. We were impressed by the systematic approach to PPI in some clinical trials units – for example the Wales Cancer Trials Unit and the University of Leeds Clinical Trials Research Unit. As a result, and with the support of senior managers, we have been working on an overall policy for PPI for the MRC CTU. We hope this will mean that PPI will become a normal part of how we do our research.
The policy recognises the central role of patients and the public in research at MRC CTU. Our aim is for CTU researchers to build partnerships with patients and the public that help to shape decisions about research, including setting priorities, developing relevant questions and disseminating results. This policy covers all research projects being led by the MRC CTU, with the exception of some methodological research. It commits us to ensuring PPI within individual clinical studies, across programmes of clinical research and at a strategic level.
The policy was developed in partnership with patients and has recently been approved by our senior management team. Our next challenge is to ensure it is implemented!
Please email us for a copy of the policy – contact details are at the end of this article.
The key lessons we have learned so far are:
*MRC CTU PPI Group: Ben Cromarty, Bec Hanley, Claire Murphy, Ellen Owen-Powell, Karen Scott, Annabelle South, Ben Spittle, Richard Stephens and Claire Vale.
Contact: Claire Vale
 You can download this for free from the Trials open access journal – the link is www.trialsjournal.com/content/13/1/9 and the reference is: Involvement of consumers in studies run by the Medical Research Council Clinical Trials Unit: Results of a survey by Claire L Vale, Lindsay C Thompson, Claire Murphy, Silvia Forcat and Bec Hanley. Trials 2012, 13:9
 You can find these on our website www.ctu.mrc.ac.uk/resources/patient_involvement.aspx
 We wrote about this work in an article which you can access free of charge. The link is www.systematicreviewsjournal.com/content/1/1/23 and the reference is: Evaluation of patient involvement in a systematic review and meta-analysis of individual patient data in cervical cancer treatment by Claire L Vale, Jayne F Tierney, Nicolette Spera, Andrea Whelan, Alison Nightingale and Bec Hanley. Systematic Reviews 2012, 1:23 doi:10.1186/2046-4053-1-23
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20 February, 2021