Moving forward with Global Patient and Public Involvement in Research

Moving forward with Global Patient and Public Involvement in Research

Sophie Staniszewska (University of Warwick Medical School), Simon Denegri (NIHR), Heather Bagley (The COMET Initiative & public contributor), Gary Hickey (NIHR INVOLVE), and Richard Morley (Cochrane) provide an update on #globalPPINetwork

Patient and public involvement is becoming embedded within health research internationally, dedicated to making research an activity done with or by patients, rather than one done about or for them. There are strong movements globally towards co-production in research, with the UK publishing recent guidance on how to bring the patients closer to key decisions in research (Hickey et al 2018). This week we held our second meeting of the International Patient and Public Involvement Network, #globalPPINetwork, building on our inaugural launch in November 2017, where the foundations for our global network were established. We want to join with organisations and individuals who want to promote and strengthen patient and public involvement in its many global forms. We believe by joining together we will be stronger, creating synergy, collaboration and influence by leveraging international change in the nature of research.

We have set ourselves an ambitious goal, to create a social movement globally, changing the paradigm, content and nature of research, so that embedded collaboration between patients, clinicians and researchers focuses on answering key questions in ways that create the most benefit for patients. As Heraclitus stated, “big results require big ambitions.”

We want to work together with a wide range of countries, with different cultural, democratic and political contexts. We recognise that patient and public involvement comes in many shapes and sizes, depending on these contexts. We want to work collectively and creatively to embrace its many forms, understand and celebrate them, and share and adopt them. Together we will strengthen our endeavour and deepen our understandings of each other’s practice.   

Our ambition for changes in the nature of research was matched by our ambition of holding an international meeting which combined a conventional conference setting with a virtual component, enabling colleagues and public contributors to present and join from all around the world and contribute to the dialogue with comments and questions. Those who joined us at the Royal Society and on-line were from Australia, Canada, Croatia, Denmark, Eire, France, Germany, Italy, Kenya, Lebanon, Netherlands, Nigeria, Norway, Spain, UK and USA.

Key speakers came from across the globe and included Simon Denegri (NIHR National Director for Patients, Carers and the Public) who provided an overview of the progress of the International Network. Professor Peter Littlejohn from Kings College London provided key insights into the international variation in forms of involvement in priority setting, based on the Brocher Foundation workshop he developed with colleagues (Slutsky et al 2016). Understanding the political and democratic context of a country was a key message in understanding how different forms of involvement might evolve. This provided an excellent context for Dr Gary Hickey from NIHR INVOLVE to present our Network’s current mission, vision and key themes for review. Everyone enthusiastically contributed thoughts to help shape and refine them further. We then welcomed Sarah Watson, Head of Finance and Core Services at Cochrane to help us think through the governance and legal entity of such a network, vital to our success as our intention is to develop a multi-funder strategy, helping us to grow internationally as a social movement.  

Our afternoon included a set of international presentations about PPI. Tamara Lotfi, Coordinator of the Global Evidence Synthesis Initiative (GESI) Secretariat at the American University of Beirut and Irena Zakarija-Grkovic, Co-director of Cochrane Croatia. Their presentations identified the need and the interest in working together to better understand how involvement might work in their country contexts. Anne Mackenzie completed the first afternoon session with a journey through the development of public involvement in Australia over the last decade, reflecting the long relationship with NIHR INVOLVE.

Now on the last leg of our amazing day, with the Royal Society technology working beautifully, enabling our international collaborators to contribute their thoughts, we looked forward to presentations by Philippa Yeeles from the National Institute for Health Research (NIHR) in England and Laura Forsyth from the Patient-centred Outcomes Research Institute(PCORI) in the USA, who both provided valuable insights into the practice of public involvement in their organisations,  the mechanisms for assessing the impact of involvement, and the opportunities for collaboration.  

At this point we said goodbye to our online participants and broke into small groups in the face to face meeting to consider the key areas we should focus on in the next period of time. We are sending a survey to our online participants to ensure their perspectives are included as we move forward. A clear need was to consider the legal entity of our Network so we can maximise our potential. Sharing resources and knowledge was key, as was joining forces to develop research that moves us forward in our understanding of what PPI works, for whom and why.  We thank everyone for their incredible engagement, including the technical team who so capably enabled us to engage with the world.  Please contact us if you want to be involved.  

Together we will be stronger. Join us.  #globalPPINetwork


  • Hickey, G., Coldham, T., Denegri, S., Green, G., Staniszewska, S., Tembo, D., Torok, K., and Turner,K. (2018) Guidance on co-producing a research project. Southampton: INVOLVE.
  • Slutsky J, Tumilty E, Max C, Lu L, Tantivess S, Curi R, Whitty J, Weale A, Pearson S, Tugenhardt A, Wang H, Staniszewska S, Weerasuriya K, Ahn J, Cubillos L (2016). Patterns of Public Participation: Opportunity Structures and Mobilization from a Cross-National Perspective. Journal of Health Organization and Management. Publication September 2016. Journal of Health Organization and Management. DOI:
  • Special edition  -
28 May 2018

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