The GBHI Patient and Public Voice (PPV) program is a two-year project working to ensure that the voice of people with lived experience of dementia is central to the work and activities of GBHI.
The program embraces GBHI’s values of authenticity, fairness, openness, respect, courage, and empathy for people with lived experience.
The PPV program also reinforces GBHI as an agent of social change by reducing stigma and inspiring optimism and dignity. The project integrates with GBHI research and explores the creation, implementation, and evolution of PPV best practice in the fields of dementia and brain health.
The GBHI PPV program is an evolving project working with all stakeholders to ensure that the GBHI community is adopting PPV best practice in research, education, and advocacy in the field of dementia.
The main participants are:
- A panel of people with lived experience of dementia – the Dementia Community Research Advisory Panel (DC-RAP)
- Atlantic Fellows, staff, and faculty at GBHI
- Key partners including the Alzheimer Society of Ireland, the UCSF Memory and Aging Center’s Family Advisory Council, Trinity IGNITE, and the PREVENT study.
Important developments include:
- Establishing the DC-RAP panel to amplify the voices of people with lived dementia experience. DC-RAP provides input on research proposals and projects, the development of training materials, and other aspects of GBHI’s work. Find more about the DC-RAP panel.
- Fostering awareness, understanding, and meaningful engagement of the GBHI community with the principles and practice of PPV through activities such as:
- Education and training: designing and implementing a GBHI PPV Education and Training Package for the Atlantic Fellows’ curriculum and incorporating PPV into fellows’ research proposals.
- Fostering a global network: collaborating with fellows around the world to develop a PPV Global Toolkit for establishing and working with local PPV programs in their home regions.
- Reflecting PPV in research: including the patient and public voice in research publications and academic submissions.