Keeping Men Informed: Sharing Trial Results
Research participants deserve to hear the results of the studies they take part in. Sharing results shows respect for their contribution, builds trust in research, and helps them feel valued.
With the NHS Health Research Authority (HRA) now expecting research findings to be shared with participants, we conducted a survey to understand why receiving trial results matters to men who take part in research, how they would like those results shared, and what information they would like to hear about.
The results were striking, with over 85% of men saying that better communication of study results would make them more likely to take part in future research.
Email was the preferred way to receive research findings, followed by webinars, scientific papers and website pages. However, scientific papers are not always accessible to everyone, highlighting the value of sharing research findings in a variety of formats.
Beyond the numbers, men's comments brought these findings to life, clearly explaining why receiving the results of the research they take part in is so important.
One man said, “Being treated as part of the team makes participation a pleasure”, while another shared that “Just being kept informed of the findings and statistics would be of benefit and ensures that our involvement matters.”
When asked what information they would like to hear about, men highlighted the following: (1) the questions the study set out to answer, (2) key details about the study (e.g. eligibility criteria, age range), (3) the study findings, (4) next steps, (5) what the results mean for men and (6) sources of support.
My husband took part in a clinical trial which both prolonged his life and had a huge positive impact on his quality of life. Importantly that drug is now available to other men with prostate cancer. I see his legacy as his contribution to making that drug available to thousands of men and the benefit it provides to them. The men who’ve taken part in trials are key stakeholders, they deserve to have the results shared with them (or their families if the man has died before the results are available). Without them the research would not be possible.
To help researchers share findings with participants, we're developing a dedicated webpage with practical advice and resources. We'll share further details when it's live. In the meantime, the HRA website offers useful guidance on best practice for informing participants about research findings.
The Prostate Cancer UK Research Team and our Patient Representative Network are also happy to review your materials and provide feedback to make sure they're clear and accessible. Please get in touch at [email protected].
Guidance for Sharing Clinical Research Results with Research Participants
The NHS HRA website provides helpful guidance on best practice for communicating research findings with participants.
Thank you
A huge thank you to all the men who took part in the survey, and helped generate these valuable insights.
