A guest blog by Frances Mossie, Public Research Champion at Maidstone and Tunbridge Wells NHS Trust, and member of the Make it Public Campaign Group.
Frances MossieI have been involved in the Make it Public Campaign for a number of years now. I am a public representative on the campaign group, and it’s such a pleasure to be part of this group and put forward my personal experience, as I feel so passionately about research.
Prior to retirement and since retiring I have been involved in research, and I am now a Public Research Champion for my local Trust, Maidstone and Tunbridge Wells NHS Trust.
This followed after having suffered breast cancer and the next year, bowel cancer. I am glad to say that because of the research, I am clear of cancer, and have been for twelve years. Upon retiring I decided I had to give something back to research - and here I am.
Twelve years ago, I was in the foyer of Maidstone and Tunbridge Wells Hospital doing some public engagement about research for International Clinical Trials Day. Most of the public did not know what research was going on. Since then we have come along way, but in terms of being more visible about what research is happening, we have further to go.
The registration of clinical trials is so important as this is the start of the transparency process. Because I am so involved with my voluntary work, I can clearly see the exciting, potentially life-changing studies which are being prepared, but many others who are not involved don’t have this awareness, and this isn’t right.
If we had all clinical trials registered, this would make things so much easier for people who are ill and want to explore how new treatments could help them. They could look at all the study details with their family and when approached by healthcare professionals, they would have the information to hand and feel prepared in making their decision as to whether to take part.
There are many other elements of transparency that are important and come together to make sure that research is accessible to everyone. But if you take away one thing – understand that if more people know about your research simply because you have made the details publicly available, this could make a big difference to someone’s life.
On a larger scale, this could help improve the health outcomes not only for the individual, but for many others in years to come, because more people feel confident to be involved.