We were successful in comparing the contextual factors, mechanisms and outcomes associated with public involvement from different stakeholders‘ perspectives and costing the different mechanisms for public involvement (objective 4).
Nevertheless, we were able to track seven of the eight case studies prospectively and in real time over time periods of up to 9 months, giving us an unusual window on involvement processes that have previously mainly been observed retrospectively. Even to track involvement over a stage of a case study research project proved difficult, as the research usually did not fall into neatly staged time periods and one study had no involvement activity over the study period. It was more difficult than expected to track the impact of public involvement from project inception through to completion (objective 3), as all of our projects turned out to have longer time scales than our own. As intended, we identified the outcomes of involvement from multiple stakeholders‘ perspectives, although we did not get as many research partners‘ perspectives as we would have liked – see limitations below (objective 2). In terms of the initial objectives, we successfully recruited the sample of eight diverse case studies and collected and analysed data from them (objective 1). In terms of the four studies with parental and young persons’ involvement that we did include, we have not done a separate analysis of their data, but the themes emerging from those case studies were consistent with our other case studies and contributed to our overall analysis. We recognise that in doing this we missed studies involving children and young people aged under 18 years in principle we would have liked to have included studies involving such children and young people, but, given the resources at our disposal and the additional resource, ethical and governance issues this would have entailed, we regretfully concluded that this would not be feasible for our study.
We recruited two studies involving parents of young children aged under 5 years, and two projects involving ‘older’ young people in the 18- to 25-years age group. In our original proposal we emphasised our desire to include case studies involving young people and families with children in the research process. A key finding is that many research projects undercost public involvement. Following feedback from the HS&DR Board on our original application we did not seek to assess the cost-effectiveness of different mechanisms of public involvement but we did cost the different types of public involvement as discussed in Chapter 7. We have identified a ‘virtuous circle’ of feedback to research partners on their contribution leading to their improved confidence and motivation, which facilitates their continued contribution. These mechanisms then lead to specific outcomes in improving the quality of research, notably recruitment strategies and materials and data collection tools and methods. We have identified how this critical contextual factor shapes key mechanisms of public involvement, including the identification of a senior lead for involvement, resource allocation for involvement and facilitation of research partners. We have developed and tested this theory of public involvement in research in eight diverse case studies this has highlighted important contextual factors, in particular PI leadership, which had not previously been prominent in the literature. While recognising the limitations of our analysis, we believe we have largely achieved this in our revised theory of public involvement in research set out in Chapter 8. The initially stated overarching aim of this research was to identify the contextual factors and mechanisms that are regularly associated with effective and cost-effective public involvement in research. How well have we achieved our original aim and objectives?
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