Gen with her brother Phil after chemotherapy, towards the end of his life
Participants, who must be 18+, can contribute any relevant ideas, but areas for consideration – such as diagnosis, education, individual empowerment, missed opportunities while being treated for other conditions, new tests or screening – are mentioned as prompts in the survey. Thoughts on all cancer types can be included in the poll, which will be open for three months.
The survey is being managed as a Priority Setting Partnership (PSP), by the Cancer Prevention and Early Detection Team at the Manchester BRC, in partnership with the James Lind Alliance (JLA). The questionnaire is integral to the PSP which is taking a systematic approach to deriving the set of unanswered research questions. The James Lind Alliance, a non-profit making organisation, supports joint working between patients, carers and healthcare professionals to improve health research.
Ex-nurse, 50 year old Gen Buckley cared for her father, Mike and brother Phil Hynes, while they were treated for bowel cancer. Telecommunications engineer Phil, who lived in Watford, died aged 46 in March this year, within nine months of diagnosis, leaving a wife and two young children. Mike, a former business studies lecturer at Manchester Metropolitan University, lived with cancer for five years, before dying, aged 63, in 2000. Both had cancer diagnosed at a late stage.
Gen, who used to work at The Royal Oldham Hospital and is a steering group member of the Detecting Cancer Early PSP, said “Supporting two close relatives through cancer diagnosis and treatment gave me a completely different perspective to my nursing role. Alternative viewpoints are valuable springboards for future research.
“Patients, carers and the public, who may have had a test for cancer themselves, will have different ideas as to how early detection can be approached. Don’t underestimate any observations and suggestions even seemingly small things can make a huge difference. Ten minutes spent filling in the survey could lead to more effective ways of finding the disease earlier. This could benefit participants themselves, their family and friends.”
After the survey closes (28 February 2019) all suggestions will be reviewed, using predefined JLA methodology, and the top 10 list of unanswered research questions agreed at a workshop involving all parties: patients, carers, healthcare professionals and public. The workshop will take place in summer 2019.
The Detecting Cancer Early Research Priorities Survey can be found here on the NIHR Manchester Biomedical Research centre website. Any questions about the survey can be directed to Dr Ellena Badrick: firstname.lastname@example.org For Twitter updates follow @EarlyPsp – #earlierthebetter.