What is the challenge your project is going to address and how does it connect to the theme of 'How can we improve across system boundaries?​

The project aims to address the critical gap in research concerning neurodegenerative conditions like dementia and Parkinson’s, by establishing a community hub for those affected and their caregivers. By forming a Patient and Public Involvement (PPI) group within this hub, the project seeks to empower the members to be involved in the conception, design, recruitment, and execution of research important to them. This initiative addresses several challenges within the current system.

·         Firstly, it enhances patient participation by providing a platform for individuals to voice their perspectives and needs, thereby ensuring that research efforts are truly patient-centred.

·         Secondly, it tackles recruitment challenges by directly engaging with the affected community, potentially increasing participant numbers and diversity.

Lastly, by prioritizing research topics relevant to those living with neurodegenerative conditions, the project bridges the gap between research agendas and the lived experiences of patients, ultimately fostering a more inclusive and impactful research landscape.

What does your project aim to achieve?

[1] Establish a Community Hub: Create a physical space where individuals with neurodegenerative conditions, such as dementia and Parkinson’s, can come together to discuss barriers to research and care they’ve experienced.

[2] Form a PPI Group: Develop a Patient and Public Involvement (PPI) group within the community hub, comprising individuals affected by these conditions, caregivers, and advocates, to actively participate in research related discussions.

[3] Improve Research Participation: Increase the involvement of individuals with neurodegenerative conditions in research by providing them with opportunities to contribute to study design, recruitment strategies, and decision-making processes.

[4] Prioritize Patient-Centred Research: Ensure that research efforts address topics and questions relevant to the lived experiences and needs of those affected by neurodegenerative conditions, thereby enhancing the impact and applicability of research outcomes.

[5] Enhance recruitment and Diversity: Overcome barriers to recruitment by directly engaging with the affected community, potentially increasing participant numbers and diversity in research studies.

[6] Reduce Health Inequalities

How will the project be delivered?

The project’s well-considered approach involves engaging relevant stakeholders, including individuals with neurodegenerative conditions, caregivers, researchers, and community organizations, ensuring diverse perspectives and expertise. By forming a PPI group, the project leverages the skills and experiences of its members to drive research priorities and enhance participation from under-represented communities.

Impact measurement will be conducted by tracking metrics such as increased research participation, improved study designs, and enhanced patient outcomes. This data-driven approach ensures accountability and guides continuous improvement efforts.

Delivering value for money is achieved through efficient resource allocation, utilising community resources, and seeking collaborative partnerships to maximize impact while minimizing costs.

Risk management strategies include proactive identification of potential challenges, such as recruitment difficulties or project sustainability, and implementing mitigation measures to address these risks effectively.

Overall, the project’s comprehensive approach ensures meaningful delivery of the objectives, whilst ensuring regular evaluation of the projects impact and its costs are reviewed.

How is your project going to share learning?

[1] Annual Project report

The community hub will generate annual reports of their impact on research and review regularly the ability to identify upcoming focus areas to look into further. These reports will be open-source and available to the general public.

[2] Publication and Presentation

We aim to publish the impact such a project can have on research in ensuring diverse and better representation of individuals from different ethnicities and background.

[3] Develop tools

We aim to develop educational material, toolkits, and resources designed by the community hub for healthcare professionals, researchers, and patient communities nationwide.

[4] Collaboration

Collaborating with other similar community groups, and professional organisations and policymakers to advocate for incorporating patient-centred approaches.