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Macclesfield cancer patient helps set top ten priorities for detecting cancer earlier

Macclesfield cancer patient helps set top ten priorities for detecting cancer earlier
09 October 2019

A Macclesfield cancer patient and former nurse has helped draw up a ‘Top Ten’ list of unanswered questions to shape future research into cancer early detection and prevention.

Emily Lam, 70, from Prestbury, worked alongside a group of Manchester cancer researchers, healthcare professionals and other patients and their families to draw up the list at a workshop last month (September).

Each of the questions addresses areas with little or no existing research, and aims to help researchers, funding bodies and the biotechnology industry to prioritise their research efforts. The research, published in The Lancet Public Health, used a "priority setting partnership" model developed by the James Lind Alliance, to develop consensus between researchers, healthcare professionals, patients and others.

Emily moved to the UK from Hong Kong in 1967 to study nursing, and became a British citizen a few years later. Over her career she worked as a nurse, midwife, and health visitor for the NHS and Department of Health, before setting up her own education business which she ran for 14 years before retiring. She currently advises a Cancer Research UK panel on early detection research, particularly on making research more accessible to minority groups.

Emily was diagnosed with breast cancer in October 2016 and underwent radiotherapy and chemotherapy at The Christie in Manchester. She was discharged in 2018 and now attends regular mammography for routine check-ups.

She said: "I’d been very health conscious and went for all the usual call-ups for screening and thought I was all right until I developed a lump between screenings. I thought screening just isn’t enough. We really need to have more research to detect cancer early.

"In my case, earlier detection would probably have spared me the gruelling effects of chemotherapy and allowed me to have a better quality of life.

"It’s important to involve patients and carers from the start of research, so their voice can be heard and become an equal partner in setting research priorities. I feel this priority-setting partnership is a new beginning and something to be encouraged.

"Even though my own top ten will have been different from other members of the group, I think the final list is a reflection of the opinions and experiences of all of us. Hopefully it will lead to research and resources in the right areas, meeting the needs of cancer patients, and supporting the priorities of the health professionals."

The study was led by the NIHR Manchester Biomedical Research Centre (BRC) and The University of Manchester, in collaboration with the James Lind Alliance.

Professor Emma Crosbie, BRC Early Detection Programme Lead and Professor of Gynaecological Oncology at The University of Manchester, co-led the study with Professor Andrew Renehan, NIHR Manchester BRC Cancer Prevention and Early Detection Deputy Theme Lead and Professor of Cancer Studies and Surgery at The University of Manchester.

Professor Crosbie said: "Early detection is key to improving outcomes from cancer. The earlier we detect it, the more likely it is we can cure it and reduce the harms of treatment."

Professor Renehan said: "Cancer early detection research is under funded compared with funding for cancer treatment-related research and, where this type of research is happening, it is generally in isolation.

"The advantage of the NIHR Manchester BRC is that it brings together a dynamic team of internationally-recognised researchers across a number of cancer and cross-cutting areas, enabling earlier cancer detection, matching an individual to the prevention treatment most likely to work for them, and working to help prevent conditions progressing into cancer in the first place."

Research was carried out between June 2018 and last month in the form of two online surveys, followed by the facilitated workshop in September in Manchester.

Dr Ellena Badrick, NIHR Manchester BRC Cancer Data Scientist and Project Coordinator, The University of Manchester, said: "The priority-setting partnership process is designed to balance the research agenda with those priorities identified by patients and healthcare professionals. Often there is a mismatch between research questions considered important by patients, carers and healthcare professionals and the research performed in early detection."

Dr Patricia Ellis, James Lind Alliance Advisor, said: "It was my pleasure to work with the Steering Group as they followed the James Lind Alliance process through to the final workshop. The levels of interest, enthusiasm and engagement across all participants led to rich and informed debate resulting in consensus on top ten research priorities."

Further information about the project is available on the NIHR Manchester BRC website.