ABOUT US

Who are we?

In 2017, a number of organisations and individuals from across the globe came together to form the International Patient and Public Involvement (PPI) Network. We believe that through the International PPI Network we can join together and enhance the opportunities such a network would bring, enabling the sharing of expertise and evidence-based good practice. Through collaboration, the International PPI Network would be empowered to influence international and regional health and social care research organisations.

How are we funded?

We are grateful for the financial support with start-up costs from the UK’s Department of Health and Social Care, and ongoing costs from the National Institute for Health and Care Research. We also acknowledge the in-kind contributions from:

Cochrane
The COMET Initiative
The University of Western Australia
Telethon Kids Institute
Babcock University
University of Southern Denmark
Warwick Medical School

In April 2024, the Network joined other health and social care research organisations in signing up to the Shared Commitment to Public Involvement. You can read more about our pledge here: Read the Shared Commitment.

* Patient and public involvement focuses on active collaboration between patients, members of the public and researchers, where lived experience and personal knowledge help to shape research. We use the phrase ‘patient and public involvement,’ or ‘PPI,’ throughout this website, however there are many other phrases that are used by the international community who work in this area to describe involving people in or engaging people with research. These include but are not limited to: community engagement, community engagement and involvement, consumer involvement, citizen engagement, patient and public involvement and engagement, participatory research, citizen science, patient-led research. We use patient and public involvement as a broad term to cover the majority of these activities.

Working together to build a world where patient and public involvement is an integral part of health and social care research

Our Mission

Our Objectives

To promote and raise awareness of patient and public involvement in health research
To support and enable patients and public to be involved in health research
To develop ways of sharing experience, knowledge and expertise of patient and public involvement in health research
To work with organisations across the globe, including those from low and middle-income countries, to learn from each other and build capacity for patient and public involvement in health research
To support the assessment of the impact of public involvement in health research on practice, policy and outcomes
To develop international standards and policies for patient and public involvement in health research

Meet the Planning Group

The Planning Group was setup to formally establish the Network, including the associated governance structures, funding, strategies and work-streams. The Planning Group provides oversight of and advice on Network activities.

Godwin Aja

Babcock University, Nigeria

Heather Barrington

The COMET Initiative, UK

Heather is Patient and Public Involvement coordinator with the international COMET Initiative and is based at the University of Liverpool, UK. Heather has also been a public research partner since 2011. Currently she is undertaking her PhD in optimising patient participation in core outcome set development.

Gary Hickey

National Institute for Health and Care Research, UK

Gary is a Senior Research Manager at the National Institute for Health and Care Research, and also the head of the Agora Digital Centre at the University of Southampton. He is passionate about developing trust between public and professionals. He works with researchers and the public, providing advice, guidance and training on patient and public involvement in health and social care research. In addition, he writes, presents and is involved in several podcasts on these issues.

Mogens Hørder

University of Southern Denmark, Denmark

Mogens Hørder is professor at the Department of Public Health, University of Southern Denmark. 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. In 2011, he took the initiative to develop PPI as an integrated part of JPND, the biggest international research collaboration on Neurodegenerative Diseases (jpnd.eu).

Anne McKenzie AM

The University of Western Australia

Telethon Kids Institute, Australia

Richard Morley

Cochrane, UK

Richard works for Cochrane as the Consumer Engagement Officer where he supports the engagement and involvement of patients, carers and the public in research. He has extensive experience of public involvement, engagement and partnership working in the voluntary, public and higher education sectors, including in research priority setting as a former adviser for the James Lind Alliance.

Professor Sophie Staniszewska

Warwick Medical School, UK

Sophie leads the Patient and Public Involvement and Engagement (PPIE) and Experiences of Care Research Programme at Warwick Medical School, University of Warwick, England. She focuses on developing the evidence base of PPIE for high quality practice. Sophie is founding Co-editor in Chief of the Springer Nature Journal, Research Involvement and Engagement.

Jeremy Taylor OBE

NIHR Centre for Engagement and Dissemination, UK

Katie Porter

Agora Digital Centre, UK

Katie is a project manager at the Agora Digital Centre, an enterprise unit at the University of Southampton UK. Katie coordinates a range of involvement and engagement activities and events, such as Network activities and events. She also provides admin support for the Planning Group.

ABOUT US

Who are we?

How are we funded?

Our Objectives

Meet the Planning Group

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