Evaluating participant experiences of Community Panels to scrutinise policy modelling for health inequalities: the SIPHER Consortium.

Data-intensive research, including policy modelling, poses some distinctive challenges for efforts to mainstream public involvement into health research. There is a need for learning about how to design and deliver involvement for these types of research which are highly technical, and where researchers are at a distance from the people whose lives data depicts. This article describes our experiences involving members of the public in the SIPHER Consortium, a data-intensive policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. We focus on evaluating people's experiences as part of Community Panels for SIPHER. Key issues familiar from general public involvement efforts include practical details, careful facilitation of meetings, and payment for participants. We also describe some of the more particular learning around how to communicate technical research to non-academic audiences, in order to enable public scrutiny of research decisions. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and properly resourced. Plain English summary: Actively involving members of the public is less common in 'data-intensive health research' (health research which does not create new data but focuses on analysing big existing datasets of statistics) than in conventional health research. 'Computational policy modelling' is an example of data-intensive health research where public involvement is not yet standard practice. This article describes our experiences involving members of the public in the SIPHER Consortium, a policy modelling programme with researchers and policymakers working together over five years to try to address health inequalities. This paper focuses on evaluating people's experiences as part of Community Panels for SIPHER. We brought together people with lived experience of health inequalities into three Community Panels, and we met for half a day 3-4 times a year to discuss and give feedback on the research. At first, it was difficult for Panel members to understand the research. Researchers had to try harder to avoid jargon, explain their work in plain English, and focus on the impact of the research in the 'real world'. Both the researchers and the Panel members learned how to communicate better over repeated meetings. Over time, we managed to have meaningful discussion of the choices researchers were making, so Panels could see their impact on the research. It was important that details of the meetings – planning meetings carefully so everyone feels welcome and valued, providing support with digital technology, financially rewarding people for their time – were taken seriously. We conclude that public involvement in policy modelling can be meaningful and enjoyable, but that it needs to be carefully organised, and takes time and money to get right. [ABSTRACT FROM AUTHOR]