An international network on public involvement in health and social care research

This is an exciting time for patient and public involvement (PPI) in health and social care research internationally.  PPI is a rapidly growing, important global movement aspiring to produce better and more relevant research resulting in services and treatments that patients and the public need. 

Patient and public involvement in research can be defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them (www.invo.org.uk). We recognise that some countries and organisations use different terms, including ‘public engagement’ to mean this same activity, but for the purposes of this survey we will use the term 'Patient and Public Involvement' (PPI).

For this reason, a number of organisations and individuals came together to form the International Network for Public Involvement and Engagement in Health and Social Care Research. The Network was launched in London on 27th November 2017. Thirty-three representatives from ten countries joined the meeting. Participants ranged from PPI ‘practitioners’ and managers, involved members of the public, researchers, policy makers, and health professionals. 

Read Tessa Richards’ BMJ blog Patient and public involvement in research goes global   

The second Network meeting took place in May 2018 and was an exciting blend of presentations on the challenges and opportunities for consumer and patient involvement globally. The meeting was held physically at the Royal Society in London and online to enable global participation. You can read our blog post here and view the presentations here.

There was also a Special Session at the 25th Cochrane Colloquium.

Vision, Mission and Objectives

Discussion at the second meeting clarified the Network’s purpose:

Vision: A world where patient and public involvement is an integral part of health research.

Mission: Working together we will build a global partnership that shares knowledge and promotes, supports and strengthens patient and public involvement in health research.

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

Next steps

The Network is actively considering its business model, writing a communications strategy including developing a website, social media plans and a webinar programme, and beginning to encourage collaboration, for example by supporting the forthcoming Global Patient Engagement Symposium organised by Alberta SPOR.  

Be part of the network

Over 200 organisations and individuals worldwide have already expressed an interest in joining the Network, from Australia to Zimbabwe.

We are still seeking your views and comments on our intent, the priorities for the network, as well as your expressions of interest to be part of this Network. You are warmly invited to complete the survey.

Taking part in the survey will take up to 15 minutes to complete depending on how much you have to tell us. If you are aware of other national or international PPI organisations that might be interested in being part of this network, please do feel free to send them the link to this survey.

If you have any questions relating to the survey or the international network, please contact Richard Morley by emailing rmorley@cochrane.org . Richard will respond on behalf of the Network development group.

Network Development Group Members

Godwin Aja, Babcock University

Heather Bagley, COMET

Simon Denegri, UK NIHR

Laura Forsythe/Kristen Carmen, PCORI

Mogens Horder, University of Southern Denmark

Anne McKenzie, Involving People in Research, Australia 

Richard Morley, Cochrane  

Sophie Staniszewska, Warwick Medical School