Ed: Better to light a candle than curse the darkness
In Northern Ireland, I had often felt like a lone voice calling for wider access to patient data by accredited researchers. Now, I'm a member of a bigger UK organisation which would have a major impact on further progress.
“Better to light a candle than curse the darkness.” This quotation came back to me when undergoing treatment for bowel cancer some years ago. In subsequent remission, I became interested in research aimed at the prevention, screening, diagnosis and improved treatments of a wide variety of cancers and other health conditions. Whilst many clinical trials existed with these objectives, patient awareness and recruitment was often poor. Additionally, some could be criticised for their lack of diversity and their restriction to particular sets of patients. A further problem was that researchers often couldn’t gain access to important patient data vital to the success of their project. In 2022, a friend emailed me about a new organisation, HDR UK Voices, which sought to address such issues. I enquired about membership, joined and then attended some of their online sessions.
In Northern Ireland, I had often felt like a lone voice calling for wider access to patient data by accredited researchers. I was now a member of a bigger UK organisation which would have a major impact on further progress. It facilitated contact with other patients and researchers with similar aims to my own.
I’m also a member of the Northern Ireland Cancer Research Consumer Forum. I have supported many successful funding applications from many researchers seeking to improve treatments for many types of cancers. As a result, there have been significant developments in treatments for prostate and bowel cancer.
However, much remains to be done. A particular type of bowel cancer spreads rapidly with poor survival outcomes. If we had a biomarker for it – a molecule in the blood which is a sign of a condition – we could identify potential problems before they arise. However, progress needs data and wider access to such data by accredited researchers. More patients need to be made aware of the importance of their data and we need to address concerns that data will not be misused in any way. It will be a major step forward if we can see progress on this front in the coming years. Without further data, progress cannot take place in many significant areas. Difficult challenges remain but a journey of ten thousand miles begins with a single step!
