REPRESENT: A Community Engagement Roadmap to Improve Participant Representation in Cancer Research Early Detection
Lead 1: Dr Ignacia Arteaga, University of Cambridge
Lead 2: Prof. Jackilen Shannon, Oregon Health and Science University (OHSU)
Lead 3: Prof. Nora Pashayan, University College London (UCL)
Lead 4: Dr Bella Starling, University of Manchester
Oregon Health and Science University (OHSU): Dr Jessica Currier, Ms Paige Farris Vocal, Manchester University NHS Foundation Trust: Ms Katharine Cresswell
University College London (UCL): Ms Chris Brew Graves
University of Cambridge: Dr Maryon McDonald, Dr Juliet Usher-Smith, Dr Charlie Massie
Patients and members of the public are at the heart of any effort to detect cancer early. They decide whether a new technology is acceptable and whether it offers any real benefit in their lives. Yet research has shown that members of disadvantaged and culturally diverse communities face barriers to participate in clinical research. Those barriers include what health professionals and researchers do or don’t do when meeting people experiencing difficult circumstances. We need to improve the way in which health research centres and diverse communities can work together so that participating in research also brings benefits to every patient. We want to tackle the underrepresentation of some communities in early detection cancer research. To do that, we will learn from different examples of research partnerships with different communities, and then invite community representatives and our colleagues to discuss what works, how, and in what context. We will design a “roadmap” that includes people’s priorities as well as researchers’ priorities. With this roadmap, we want to foster trust between health research centres and the public. This way, scientists can recruit people from all possible backgrounds for their studies while making sure that people’s participation in clinical research is also beneficial to them.
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ACED is a £55 million partnership between world-leading early detection institutes and organisations dedicated to improving the early detection of cancer.
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