The Invest4Health consortia partners have committed to involve citizens and patients in the governance of the project by supporting the launch of the CPAG, Citizen Patient Advisory group. The CPAG consists of 12 individual participants, recruited from across Europe, acting in a personal representative capacity, that are examining how best to include the citizen voice in the project and thinking about what sort of social impact should be prioritised and why.
Citizen engagement, Citizen science and Patient public involvement and engagement, known as PPIE, are concepts that are used interchangeably with different but overlapping interpretations. The European Commission itself has an interest in stronger citizen participation in its democratic processes and R&I activities https://citizens.ec.europa.eu/index_en), whilst the WHO has its own framework for meaningful engagement (https://knowledge-action-portal.com/en/content/who-framework-meaningful-engagement-people-living-noncommunicable-diseases-and-mental-health#:~:text=WHO%20has%20defined%20meaningful%20engagement,applying%20it%20to%20improve%20health), both designed to boost participatory research and participatory governance.
Citizens and patients are equal stakeholders and will be exploring how the I4H research drives change in local areas to better reflect consumer and citizen concerns. Systems including public financing authorities, health insurance, academia, social entrepreneurs and the voluntary sector are coming together, to explore how the new financing model SCI, can better contribute to a thriving, successful, inclusive society.
Several applied frameworks for PPIE patient public involvement and engagement have been evaluated and two will be used throughout the I4H project to monitor, report and assess progress. Whilst there are differences in the specific case studies in the regional test beds, the role of the CPAG is to develop appropriate communication plans with easy-to-read messages that reflect the value of the research and help consortia partners co-facilitate with different community partners. CPAG feedback will guide the engagement strategy by exploring opportunities for sustained presence and interactions with the community and supporting knowledge mobilisation activities. The CPAG will advise the project on providing information or sharing knowledge with public audiences, thereby supporting community engagement.
Community engagement is heavily focused on forming strategic, long-term partnerships that aim to gain a deeper awareness of how services should evolve and be tailored to meet the needs of different populations. These partnerships act as information funnels to local communities and help reduce inequalities.
Members of the CPAG have extensive networking experience, forming collaborations with patient advocacy and community groups. They will advise the project on how best to extend the work’s reach to different underserved populations, thereby helping promote better Equality, Diversity, and Inclusion by addressing issues like health and technical literacy and access.
The CPAG is not solely about the what type of participatory research approaches are being taken, but about the how to have systems, processes and people in place for a consistent, sustainable and measured engagement of citizens. The CPAG provides a practical way to embed a 360-degree feedback loop in I4H as an overarching integration advisory group for Invest4Health by applying key principles of collaboration such as:
- a collaborative mindset
- community-led trusting relationships
- a shared vision and purpose
- collaborative behaviours
- shared learning
- collaborative infrastructures.
