ABSTRACT
Background: Since its inception in 2000 the UK’s National Cancer Research Institute (‘NCRI’) has committed to involve Consumers (patents and public) representatives in all aspects of its work. Methods: Consumers are recruited in open competition, trained for specific NCRI roles, and supported to work beyond those roles. The NCRI Consumer Forum contains 140 members from all four UK nations, providing a pool of experienced advocates working in all areas of cancer research. The membership reflects the geographic diversity of the four UK nations. Results: 75% of Consumers work with research funders or organisations outside the NCRI Partners. In the 2021 census, more than 50 such organisations were identified, including local, national and international organisations, charities, NHS Trusts, online communities and patient groups. Consumers work or have worked with industry including Big Pharma, biotechs and medical device manufacturers. They serve on Trial Management/Steering Groups, sit on research funding committees and hold governance or accountability posts, eg Board members, Charity Trustees, NHS Commissioners. All have worked on patient information, including websites, videos and audio. During the COVID-19 pandemic in 2020-21 the Consumer Forum worked collaboratively with the UK Coronavirus Cancer Monitoring Project to create, distribute and analyse a survey asking cancer patients what was important to them for COVID-19 and cancer research. Results informed the direction of Covid-19 and cancer research in the UK. This collaboration continued with regular discussion around new research areas and collaboration on peer-reviewed journal articles. Consumers work/have worked with strategic bodies in the UK and beyond eg NICE, MHRA, HRA, BBMRI-ERIC, EORTC. Consumers have provided responses to two recent UK Government consultations, inputting into the strategy of the UK regulatory environment via the MHRA clinical trials regulation and shaping the future strategy for cancer care and research via the national 10-year cancer plan. Conclusions: The NCRI Consumer Forum is a group of Patients and Carers promoting evidence-based medicine and evidence-based policy in the UK and beyond. Legal entity responsible for the study: NCRI. Funding: Has not received any funding. Disclosure: All authors have declared no conflicts of interest.