Knowledge-sharing and collaboration in NIHR patient & public involvement : a comparative case study

Abstract

Background - The National Institute for Health Research (NIHR) place great importance on PPI in everything they fund. Anecdotally there are claims of siloedworking and duplication of activities in PPI. The Breaking Boundaries review recommended regions coordinate and collaborate to share knowledge and resources. However, little is known about opportunities for sharing and collaboration, how it might be achieved and the views of NIHR PPI staff. The aims of this project are to highlight areas for improvement and potential solutions to regional and national PPI knowledge-sharing and collaboration; and to identify opportunities to share NIHR PPI resources across the infrastructure organisations involved in research design, funding and delivery, and determine whether a streamlined model of PPI across the NIHR is feasible. Methods - This research employed a comparative case study design. Data were collected through in-depth one-to-one telephone interviews with NIHR PPI staff from the Research Design Service (RDS), local Clinical Research Networks (locCRN), and funding panel public contributors. Supplementary data was collected to identify regional and national sharing and collaboration in the wider NIHR infrastructure from a document review and mapping exercise of NIHR PPI annual reports. Within- and cross-case analyses were conducted of the interview data using Qualitative Content Analysis. For the document review data was abstracted and the connections between NIHR infrastructure organisations mapped and presented diagrammatically. Triangulation (data and methodological) of the interview and document review data was conducted as a means of verifying the data Within case findings - For the RDS there was little evidence of sharing resources with other RDSs. Three knowledge-sharing and collaboration themes were: a messy landscape of un-coordinated PPI; direction on effective sharing and collaboration and the longer-term goals of INVOLVE/RDS partnership; collaborative culture regionally and nationally. In the locCRN there was evidence of some neighbouring locCRNs sharing resources. Three key themes were: the value of knowledge-sharing and collaboration; PPI boundaries; and communicating nationally to facilitate knowledgesharing and collaboration across locCRNs. For funding panel public contributors overarching key themes were, revision of public contributor training and support; cross NIHR PPI Exchange; and complementary PPI. Cross-case findings - For RDS and locCRN , key antecedents to knowledgesharing and collaboration were the nature of the knowledge and contribution, situational factors and individual motivation. Barriers/enablers to the act of collaboration were collaboration champions, role ambiguity, no buy-in, trust and collaboration for own gain. Synthesis of the funding panel data with that of RDS and locCRN resources highlighted opportunities to share across NIHR. Triangulation verified data from RDS, LocCRN and the document review. Conclusions - There are three conclusions from this project. First that the NIHR culture is not one of sharing and collaboration. Second, there is duplication of NIHR PPI resources and not a great deal of sharing. Third, both the wider NIHR and public contributors could benefit from shared working. Key recommendations are: to create a community of practice for staff with a PPI role/responsibility that is driven by the needs of the stakeholders and is a community they wish to be part of; top-down changes to formalise sharing and collaboration, hold a blue skies event to reevaluate NIHR PPI, provide regions with the skills and tools to embrace and progress collaboration and exemplars of sharing and collaborative ventures; utilise and build upon current structures to centralise PPI resources, create a register of public contributors to learn about PPI opportunities and a cross PPI exchange for public contributors as a learning opportunity and to impart their knowledge to others.