Inclusive Involvement: Practical Steps You Can Take Today
This guide is about turning the ideas of equality, diversity, and inclusion (EDI) into practical action. We wanted to move beyond theory and show what you can actually do to make public and patient involvement (PPI) in research more welcoming and enjoyable for everyone.
The inspiration for this guide comes from the rare disease community, where people living with rare conditions, their families, and charities have been calling for more inclusive approaches to involvement. Their insights and experiences shaped much of what you’ll read here. At the same time, the lessons and ideas apply well beyond rare diseases. They are relevant for anyone who wants to make PPI stronger and more inclusive.
This guide is for anyone involved in research, including patients, members of the public, researchers, research charities, PPI leaders, funders, and healthcare professionals. If you want to improve EDI in PPI, this guide is for you.
In it, you’ll find clear explanations of what EDI means, why it matters, and practical, actionable ideas to make involvement more inclusive.
