Co-creation in Health Research – Patient and Public Involvement (PPI)

The involvement of members of the public, patients and family members in research, public engagement and collaboration with different stakeholders in health research or health-related citizen science is often referred to as PPI, short for Patient and Public Involvement.

There is strong and growing interest in co-creation and public involvement in research. Co-creation in research, both as an approach and as a research method, is described using a wide range of terms. Research funders, for example, use concepts such as:: Public engagement, Stakeholder involvement, Participatory action research, Citizens engagement, Community engagement, Citizens involvement, Patient and public involvement (PPI), Community-based participatory research, Public participation, Place-based public engagement,  Patient and public involvement and Engagement (PPIE), End-user involvement, Citizen science, Civic engagement och Societal engagement….

This wide range of terminology reflects both the growing interest in co-creation and the diversity of research disciplines in which different co-creative approaches have emerged.

At Public & Science Sweden, we use the term co-created research to describe research carried out with members of the public (that is, people who are not formally trained researchers within the field), rather than about, for or to the public. Co-creation takes place through dialogue, where all parties, stakeholders and participants gain something from being involved in the process. Co-creation may occur at one or several stages, or throughout the entire research process.

During 2024–2025, Public & Science Sweden delivered a series of workshops on PPI, focusing on practical guidance, ethical considerations and how to get started. Overall, the workshops showed that practical support for researchers who wish to work in co-creative ways needs to be strengthened. Universities and higher education institutions could usefully develop support materials and central resources, such as:

• checklists, templates and process support for PPI and other co-creative activities during project planning (see the PPI Project Design Canvas, developed as a visual planning tool)
• guidance on reimbursement models and collaboration agreements
• advice on ethics, GDPR and roles and responsibilities
• support in establishing contacts with patient organisations and relevant target groups

There is also a clear need for skills development in co-creation methods. Even a modest support structure could have a significant impact, for example, by organising regular lunch seminars, facilitating experience exchange between researchers, and increasing the internal visibility of ongoing co-created research projects.

Further reading, links and resources

• The International Collaboration for Participatory Health Research (ICPHR):
  Focused working groups (children, ethics, refugees etc)
• PPI Ignite: Newsletters, resources
• ECSA – European Citizen Science Association:
  Working group for Citizen Science for Health
• Patient and next-of-kin collaboration for better research and healthcare Collaboration 2.0: Sustainable collaboration for value and innovation  Anna Clareborn et al.
• Public Involvement Impact Assessment Framework (PiiAF).
• Book ‘Participatory Action Research: Ethics and Decolonisation’ by Caroline Lenette.
• Book ‘Ethics in Participatory Research for Health and Social Well-Being: Cases and Commentaries’ by Sara Banks and Mary Brydon-Miller (editors).
• Book ‘Participatory Research for Health and Social Well-Being’ by Tineke Abma et al.
• The article ‘An Analytical Tool to Help Researchers Develop Partnerships with Children and Adolescents’ by Harry Shier.
• Staniszewska, S., Hickey, G., Coutts, P., Thurman, B., & Coldham, T. (2022). Co-production: A kind revolution. Research Involvement and Engagement, 8(1), 4. https://doi.org/10.1186/s40900-022-00340-2
• Staley, K. (2015). ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research Involvement and Engagement, 1(1), 6. https://doi.org/10.1186/s40900-015-0008-5

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The use and development of the PPI Project Design Canvas is published as a Scientific Article: The PPI project design canvas: a structured tool for planning public and patient involvement in research