Exploring areas of consensus and conflict around values underpinning public involvement in health and social care research: a modified Delphi study

Abstract

ObjectiveThere is growing interest in the potential benefits of public involvement (PI) in health and social care research. However, there has been little examination of values underpinning PI or how these values might differ for different groups with an interest in PI in the research process. We aimed to explore areas of consensus and conflict around normative, substantive and process-related values underpinning PI.DesignMixed method, three-phase, modified Delphi study, conducted as part of a larger multiphase project.SettingThe UK health and social care research community.ParticipantsStakeholders in PI in research, defined as: clinical and non-clinical academics, members of the public, research managers, commissioners and funders; identified via research networks, online searches and a literature review.ResultsWe identified high levels of consensus for many normative, substantive and process-related issues. However, there were also areas of conflict in relation to issues of bias and representativeness, and around whether the purpose of PI in health and social care research is to bring about service change or generate new knowledge. There were large differences by group in the percentages endorsing the ethical justification for PI and the argument that PI equalises power imbalances. With regard to practical implementation of PI, research support infrastructures were reported as lacking. Participants reported shortcomings in the uptake and practice of PI. Embedding PI practice and evaluation in research study designs was seen as fundamental to strengthening the evidence base.ConclusionsOur findings highlight the extent to which PI is already embedded in research. However, they also highlight a need for ‘best practice’ standards to assist research teams to understand, implement and evaluate PI. These findings have been used in developing a Public Involvement Impact Assessment Framework (PiiAF), which offers guidance to researchers and members of the public involved in the PI process.

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

“…The basic science studies in the RAPPORT study that did have a firm PPI underpinning adopted a partnership approach, 105 even though at times this partnership came under strain, particularly over issues of who had more say in decisions about the use of data. Conflict or tension, while posing difficulties to resolve, is not necessarily undesirable and, indeed, is evidence of engagement, 105,174 so much so that where it was managed well, through, for example, clear guidelines, dialogue and consensus, it was seen to add to the strength of the case study in terms of how embedded PPI was.…”

“…25,175 Its process value set included concepts such as partnership and equality, respect, trust and honesty, which we have mostly subsumed under our 'moral', 'methodological' and 'policy' value sets. However, whichever labels are used to define value sets, it is clear that different value sets are seen to lead to diverse constructions of PPI, 28,174 and can affect whether or not and how PPI is evaluated.…”

“…For example, researchers may articulate PPI more from the methodological perspective (to improve research quality), whereas lay representatives within the case study may frame their involvement more from the moral viewpoint (a right to be involved or an altruistic motive). As suggested by others, 25,174 as long as both of these perspectives were acknowledged then PPI was enabled. However, there were a few examples when conflict arose because, rather than being synergistic values, they worked in tension, for example PPI role in management and governance of study versus PPI right to have joint ownership of data because of charitable funding of the study.…”

“…174 Funding organisations often drew a focus on either the moral or the methodological rationale for PPI, and this shaped requirements for PPI within research projects. Funders primarily articulating the methodological perspective expected greater detail about PPI processes and placed increasing emphasis on capturing the impact of PPI.…”

Patient and public involvement and the implementation of research into practice

“…To remedy this, a number of toolkits are currently being proposed to facilitate both the systematic reporting of PPI activities in health and social care research (Staniszewska et al, 2011) as well as aid in the coherent articulation of the values guiding involvement activities in specific projects (Snape et al, 2014).…”