Patient and public perspectives shaping scientific and medical research: panels for data, discussions, and decisions

Seilin Uhm1, Kristin Liabo1, Ruth Stewart1,2, Rebecca Rees1, Sandy Oliver11Social Science Research Unit, Institute of Education, University of London, London, UK; 2The Centre for Language and Culture, University of Johannesburg, Johannesburg, South AfricaAbstract: This paper explores the role of patient panels for shaping research for health, scientific research about health and illness, and applied medical research. After examining the history and purposes of involving patients in discussions and decision making for research, it outlines the expertise and skills required if panels are to be successful. The paper also analyses existing guidance for panels that include patients. Panels benefit from the experiential knowledge of panel members, craft knowledge of panel facilitators, and organizational knowledge gained through previous experience of hosting panels. Guidance is available that addresses structures and resources (for panel funders) and interpersonal communication and group dynamics (for panel members and facilitators). This guidance is most comprehensive when it has itself been developed by all these types of stakeholders.Keywords: public involvement, patient panels, expert panels, guidelines, guidance