Inclusion by design: How to address structural and cultural barriers to PPIE in academic research
Our new report, Inclusion by design, sets out how patient and public involvement and engagement (PPIE) can be more meaningfully embedded across the research system.
We’re pleased to share our new report Inclusion by design: How to address structural and cultural barriers to PPIE in academic research. The report sets out how patient and public involvement and engagement (PPIE) can be more meaningfully embedded across the research system. While it is grounded in the experiences of rare condition researchers, its findings are relevant across a number of biomedical and healthcare research disciplines.
Meaningful PPIE is widely recognised as essential to high-quality research. However, many researchers continue to face structural and cultural barriers that make it difficult to deliver in practice. By bringing together researchers at different stages of their career to explore these issues in more depth, we have developed a set of recommendations to address these challenges and help drive systems-level change in academic research.
The eight recommendations we have set out focus on what needs to change. They aim to address the core structures, resources and incentives needed to embed meaningful PPIE and are intended for both institutions and individuals across the research ecosystem.
- Take a shared approach to responsibility for delivering PPIE
- Commit adequate project funding dedicated to delivering PPIE
- Professionalise and expand PPIE training for researchers
- Develop organisational strategies to maximise diversity and inclusion
- Simplify institutional reimbursement processes for PPIE
- Build cultures of peer sharing and learning-by-doing
- Integrate PPIE into career progression and appraisal frameworks
- Enhance the visibility of PPIE in research outputs
Crucially, the recommendations are not a call to stretch existing resources further or to place responsibility solely on researchers. Alongside the need for leadership from those with influence in academia, funding and publishing, the report also identifies practical ‘quick wins’ that can help embed meaningful change now.
What struck me when reading the report is the importance of shared responsibility and collaboration in order to address the barriers. We need to see a range of different organisations stepping up to take the lead on the different recommendations and actions.
Dr Natasha Ratcliffe, Principal, Patient Engagement, LifeArc
If embraced, the recommendations in our new report have the potential to improve the quality, relevance and impact of research, particularly research into rare conditions, where the level of unmet need remains high.
Amy Hunter, Director of Research, Genetic Alliance UK
We hope the report is a useful contribution to ongoing discussions about strengthening research culture. For any questions, please email: [email protected]