Involving the public in epidemiological public health research: a qualitative study of public and stakeholder involvement in evaluation of a population-wide natural policy experiment

BACKGROUND: Public involvement in research is considered good practice by European funders; however, evidence of its research impact is sparse, particularly in relation to large-scale epidemiological research. OBJECTIVES: To explore what difference public and stakeholder involvement made to the interpretation of findings from an evaluation of a natural policy experiment to influence the wider social determinants of health: ‘Flexicurity’. SETTING: Stockholm County, Sweden. PARTICIPANTS: Members of the public from different occupational groups represented by blue-collar and white-collar trade union representatives. Also, members of three stakeholder groups: the Swedish national employment agency; an employers’ association and politicians sitting on a national labour market committee. Total: 17 participants. METHODS: Qualitative study of process and outcomes of public and stakeholder participation in four focused workshops on the interpretation of initial findings from the flexicurity evaluation. OUTCOME MEASURES: New insights from participants benefiting the interpretation of our research findings or conceptualisation of future research. RESULTS: Participants sensed more drastic and nuanced change in the Swedish welfare system over recent decades than was evident from our literature reviews and policy analysis. They also elaborated hidden developments in the Swedish labour market that were increasingly leading to ‘insiders’ and ‘outsiders’, with differing experiences and consequences for financial and job security. Their explanation of the differential effects of the various collective agreements for different occupational groups was new and raised further potential research questions. Their first-hand experience provided new insights into how changes to the social protection system were contributing to the increasing trends in poverty among unemployed people with limiting long-standing illness. The politicians provided further reasoning behind some of the policy changes and their intended and unintended consequences. These insights fed into subsequent reporting of the flexicurity evaluation results, as well as the conceptualisation of new research that could be pursued in a future programme.