A Global Perspective for Implementing Patient and Public Voice in Research

Global Atlantic Fellows Luciano Mariano and Khanyo Ngcobo share video case studies of their experiences putting Patient and Public Voice (PPV) / Public and Patient Involvement (PPI) into practice in their work and region.

group of people sitting in circle talking

Traditionally, health research has largely bypassed patient and public feedback and experience with ‘expert’ research being developed by professionals through a top-down approach. More recently, individuals with lived experience, such as patients and carers, have been included, not just as consumers of research, but as important stakeholders in the entire research cycle.

We believe that public involvement in dementia research can be the driver for change, radical transformation, and innovation in the development and implementation of research in the field of dementia and brain health. The public cannot be excluded from participating in and implementing research that is intended to impact their lives. Researchers should promote public involvement in dementia research so people can contribute to the overall quality and relevance of research outcomes. Public Involvement in dementia research is a step towards promoting citizen empowerment and patient-centered care. 

Video Case Studies

We are pleased to share video case studies of our experiences of putting PPI into practice in projects in Brazil and South Africa. 

Coming Soon

To mark World Alzheimer’s month 2023, we will be sharing further resources developed by the GBHI Global PPV Framework working group over the upcoming month. This will include a publication which introduces the process of PPV/PPI practice in dementia research, shares best practice and principles and aims to provide a template that can be easily adapted and localized for specific regions or countries and cultural contexts. We hope that this will be an invaluable resource for patient organizations, teachers, students, social workers and others who work with dementia research projects and activities around the world.