“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!
Clara: Breaking the silence for neurodiverse voices
4 September 2023
By sharing our unique experiences, we can help researchers and patients learn from each other. Open the door and see how it is. Give one step and you can always go back out.
Munisa: Be ready to have your say, never underestimate your value
4 September 2023
After personal experience with a rare condition, I know how it feels to be bombarded with jargon and misleading articles. Getting involved allows me to have a say in all parts of the research process.
Request for Comments: PEDRI Best Practice Standards for the Use of Data for Research and Statistics
30 May 2023
The Public Engagement in Data Research Initiative (PEDRI) is seeking consultation on the first draft of new standards to guide best practice for involvement and engagement activities in the use of...