An embedded co-production approach to patient and public involvement in research about data sharing in health and social care – Reflections from the Qualitative Data Preservation and Sharing (Q-DaPS) project.

To reflect on an embedded co-production approach to PPI using the Q-DaPS project as a case study.  Participants will explore the benefits and challenges of this approach. Gaining understanding of how co-production PPI offers opportunities for research to be designed, shaped, conducted and analysed by those with lived experience. Considering how this can lead to the development of different research questions provides opportunity to ensure equitable exploration. Collaborative analysis, acknowledging different perspectives and positionality, can lead to rich research findings. 

1. A brief presentation providing an introduction to the Q-DaPS project - including the approach to PPI, the importance of context and selecting a PPI strategy that meets the needs of a project. 2. Facilitated small group discussions around issues and insights from this project, covering issues such as: a. Power- who gets to decide what public contributors should do, are there inherent power differentials between researchers and public contributors. How do you build mutual trust and respect? b. Emotions- qualitative work can give rise to strong emotions for both researcher and participant due to topic matter and questions of data ownership. How do we manage strong emotions and work together? c. Identity- Does working in this collaborative way lead to issues with personal and professional identity which can overlap with imposter syndrome?  d. Relationships- how do we build relationships, trust and come together as a team?  3. Reconvening for feedback from small group discussions 4. Summary/conclusions 

The shift towards Open Science means that there is an increasing expectation amongst funders and publishers of health and social care research in the UK that where appropriate, all data be made available for re-use. This potentially raises ethical, theoretical, methodological and practical challenges. Our PPI co-investigators raised the point that research participants have largely been excluded from conversations and considerations around qualitative data sharing.  This is despite the fact that qualitative data is co-created through interaction between interviewer/facilitator and participant. As a result of our co-production approach our PPI co-investigators were able to define research participants as a key stakeholder group for inclusion in our work on views on qualitative data sharing and re-use in health and social care research.  This workshop draws on our experiences of an embedded co-production approach to patient and public involvement throughout our Q-DaPS project. We outline the role our PPI co-investigators have played in shaping our research from the outset and our PPI co-investigators will reflect on their experiences of raising important research questions, contributing to study design, co-facilitating focus-groups, analysis and dissemination.