Patient and public involvement in co-designing a smoking cessation pathway for people with cancer

Abstract Background Developing an intervention to support people who smoke and have cancer is a complex public health issue. Inclusive research development is fundamental, with public health funding agencies and research guidance emphasising the inclusion of patient and public involvement (PPI). PPI means involving ‘experts by experience’ (EBE) as partners rather than research participants. Limited evidence of PPI engagement exists in published literature. This study aimed to embed PPI across co-design phases in developing a smoking cessation (SC) pathway for people who smoke and have a cancer diagnosis. Methods A five-stage approach was completed [Feb 2020 - Apr 2022]. Stage 1: Dragons’ Den: PPI knowledge sought to refine the research question at a Patient Voice in Cancer Research (PVCR) and National Cancer Research Institute UK (NCRI) event. Stage 2: Study Advisory Committee (SAC) formed with membership from EBE (three former smoker cancer patients), cancer specialists and national tobacco control experts. Stage 3: Documentation review by SAC, including interview topic guides and questionnaires. Stage 4: Systematic review outputs reviewed by EBE. Stage 5: PVCR workshop held to examine systematic review evidence, survey and qualitative interview data supporting the co-design of a SC pathway. Results PPI was embedded across the study through research questions shaping, choice of wording and terminology used, including (i) phrasing of questions associated with treatment and quitting, (ii) piloting and sequencing of questions in surveys and interviews, including emotive questions on the nature of smoking. Members of the SAC provided unique expertise, resulting in co-authorship on published papers and abstracts. The PVCR virtual workshop facilitated collaborative discussions to inform the development of a SC pathway for cancer patients. Conclusions PPI partnership provided real-time confirmation of decision-making and was a key strength in co-designing a SC pathway. Key messages • Developing a smoking cessation pathway, including co-design methods, ensures that research questions are important for patients and use appropriate methods. • Patient and Public Involvement in research design and development is an essential partnership.