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

An international network for public involvement and engagement 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).

With this growing movement comes an opportunity to change the face of research across the world for good, so that it better reflects the needs and priorities of patients, carers and the public. There are institutions, associations and individuals, whose purpose is to advance and promote public involvement in research. We believe the time has come to join together and enhance the opportunities such a network would bring, enabling the sharing of expertise and evidence-base good practice. For organisations starting to develop public involvement in their own country, it would offer a powerful network of support to enable faster progress. Moreover, through collaboration, our movement would be empowered to influence international and regional health and research organisations.

We are looking to develop and establish an international network over the next twelve months. We are committed to doing this in partnership with patients and the public and through an open process of dialogue, consensus meetings and surveys, involving colleagues and partners across the world.

This is your opportunity to help shape the network.

To this end, we are 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 enterprise. You are warmly invited to complete the survey which is found at https://www.surveymonkey.co.uk/r/MYWRFDY

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.

We will be analysing the responses and will contact you again if you have given permission for us to do this.  An analysis of the responses will be found on our respective websites and will also be sent to people who give us their email. It is our hope to announce the results at the forthcoming Global Evidence Summit in Cape Town (http://www.globalevidencesummit.org) and launch the new network at the INVOLVE conference in the UK in November 2017 (www.invo.org.uk).

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 team. Our details can be found below.

Heather Bagley, COMET
The COMET (Core Outcome Measures in Effectiveness Trials) Initiative brings together people interested in the development and application of agreed standardised sets of outcomes, known as ‘core outcome sets’ http://comet-initiative.org/

Simon Denegri, NIHR
The UK’s National Institute for Health Research funds health and care research and translate discoveries into practical products, treatments, devices and procedures, involving patients and the public in all its work. http://www.nihr.ac.uk/

Zoe Grey, Involve
Gary Hicky, Involve
INVOLVE is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world. www.invo.co.uk

Richard Morley, Cochrane  
Cochrane is global independent network of researchers, professionals, patients, carers, and people interested in health. Cochrane contributors work together to produce credible, accessible health information that is free from commercial sponsorship.

Sophie Staniszewska, Warwick Medical School
Sophie Staniszewska leads the Patient and Public Involvement (PPI) and Patient Experiences Programme at the RCN Research Institute, Warwick Medical School, University of Warwick. http://www2.warwick.ac.uk/fac/med/research/hscience/rcn/staff/sophie_staniszewska/


Now is the right time to come together. We hope you will join us.