Across the globe we use different terms to describe how we include patients and the public in research. Some parts of the globe make reference to public engagement, some to patient and public involvement and others to community engagement and involvement. Moreover, there are variations across the globe about our understanding of what we mean by including patients and the public in research, how embedded it is in research culture and how it finds expression.

In this webinar, part of the International PPI Network: Learning Live webinar series, the presenters explored how these challenges were addressed in the largest global research initiative aimed at tackling the challenge of neurodegenerative diseases. The EU Joint Programme – Neurodegenerative Disease Research (JPND) aims to increase coordinated investment between participating countries in research aimed at finding causes, developing cures, and identifying appropriate ways to care for those with neurodegenerative diseases.

The webinar was delivered in October 2023 and below you will find the videos from the webinar, together with accompanying slides to download [PDF].

Part 1: Presentation
Part 2: Questions & answers

Presenter bios

Mogens Hørder - Mogen's main qualifications in PPI are the development, implementation and evaluation of PPI at both national as well as regional and institutional level. He focuses on the roles of the researchers, the roles of the patient in PPI and the interaction of the two as partners in PPI. His interest in Patient and Public Involvement in Research started in 2005 when he became the chairman of a commission by the Ministry of Health in Denmark that would suggest a revised law for the evaluation of the ethics of research proposals. In 2011, he took the initiative to develop PPI as an integrated part of the international research collaboration on Neurodegenerative Diseases (jpnd.eu). He has several international contacts on PPI and has been invited as a lecturer on PPI in relation to the development, implementation and assessment of PPI in Norway, Ireland, England, and Sweden. Email : mhorder@health.sdu.dk  

Alexandra Alves-Rodrigues - Alexandra, researcher neuroscientist, is a member of the working group for the“ International network for public involvement and engagement at the Joint Programme for Neurodegenerative Diseases (JPND) research.  Alexandra is currently an Invited Researcher at the Department of Public Health, University of Southern Denmark. Since 2016, her interests and qualifications in PPI are the development, implementation and evaluation of PPI in neurodegenerative research in international research consortia. She focuses on the roles of researchers and patients and the impact of their partnership in the outcome of research involving different countries and cultural contexts. 
Email: alexandralvesrodrigues@gmail.com

Part 1: Presentation

Part 2: Questions & answers

Additional materials

Download the slides from the webinar [PDF]