Global Patient and Public Involvement Network: The vision and mission

Patient and public involvement in health research is now happening across the world1,2,3. Not only do patients and the public have a right to be involved in decisions that impact upon them, but involving patients and public in research leads to better research and better outcomes. The time is right to bring this knowledge and expertise together to create a world where patient and public involvement in health research is the norm.

On the eve of the INVOLVE conference in November of 2017 a group of people from INVOLVE, National Institute for Health Research, Cochrane, COMET and the University of Warwick launched the International Network for Public Involvement and Engagement Health and Social Care Research.

We now have an expanded network planning committee (with colleagues from the Consumer and Community Health Research Network in Australia, the University of South Denmark, Babcock University in Nigeria, and the Patient-Centered Research Outcomes Institute in the USA). This is a network that anybody with an interest in patient and public involvement in research can join. A year on, what progress have we made?

A key step for any new organization is the development of its vision, mission, and objectives. It is this which will give us a clarity of purpose both to our members and to the outside world. Discussions began at the launch of the network and some of the key issues raised have been noted in a previous commentary by Tessa Richards.

Data was also collected from people joining the network (over 200 members and growing) who were asked via a questionnaire to choose their priorities for the network. And finally we held two webinars and a face to face event combined with a webinar in London where we sought to get clarity.

At the event in London it became clear that for many people the themes were not an either or choice but rather they wanted the network to embrace all three.

A key challenge was reconciling three themes that emerged from the survey and the webinar events. Some people wanted a network that would simply enable the sharing of knowledge and expertise on all things patient and public involvement in research. Examples included the sharing of ‘how to’ guides and tips on what works and what doesn’t work in public involvement in research.

A second theme was for a network that will facilitate partnership working on patient and public involvement across the world. One suggestion was for the network to develop a database of members, complete with research interests and history, which could be used, with the aid of search functions, to enable researchers and public to seek out potential research partners.

Finally, a third theme was for a more ambitious network whose actions could change policy and further patient and public involvement across the globe.

At the event in London it became clear that for many people the themes were not an either or choice but rather they wanted the network to embrace all three. As such the planning committee developed the following.

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 organizations 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

We think that the vision, mission and objectives reflect the three themes of sharing knowledge and expertise, achieving change and partnership working. These are not cast in stone and we intend to review them after a year to see if they are still fit for purpose.

Work has now begun on addressing some of the objectives. We will soon be launching a webinar series, including from low and middle income countries, that will enable people from across the world to share their experiences, knowledge and expertise of patient and public involvement in research.

So, we have taken the first positive steps on the path to building the network. But there is clearly a long way to go. We hope that you will support and join us on this journey to make patient and public involvement in health research the norm. As we start to address the objectives there will be more and more opportunity to include our members. Come and join us on this journey and help shape the future of patient and public involvement in health research. You can join here .

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