Patient and public involvement in the medicines development process: Perspectives from the UK, Spain and Poland

2014 Conference

Abstract:

Background: The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a project which aims to increase patient and public involvement (PPI) in medicines development across Europe. Although the UK evidence base for PPI in health research is well established and growing, little is known about other European countries.

Aims: To explore patients’ and the public’s knowledge, and beliefs, and other key stakeholders’ perspectives (pharmaceutical industry, healthcare policymakers and clinical researchers) about PPI in medicines development in the UK, Spain and in Poland.

Methods: Qualitative studies using focus groups and one-to-one interviews.

Findings: 210 participants across all countries. UK patients reported the greatest understanding, and experience of PPI, and other UK stakeholders reported the greatest knowledge, experience and ideas regarding approaches to PPI. There was some PPI knowledge in Spain and Poland with participants speaking about patients lobbying and influencing research priorities, but not about PPI in the research process. Despite reporting more PPI experience, UK participants identified similar challenges to PPI in medicines development as those in Spain and Poland. These included a lack of knowledge of the systems and structures within which medicines development occurs and the importance of and challenges to all stakeholders developing effective relationships.

Conclusion: Lessons may be drawn from the UK experience of PPI in health research when developing PPI in medicines development across Europe. Not all UK approaches will be directly transferable due to differences in health systems, and public knowledge of and receptivity to clinical research. Our findings also highlight the importance of increasing the transparency and public knowledge of the systems within which medicines development occurs across Europe.

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Authors

Parsons ~ Suzanne

Researcher, Central Manchester NHS Trust and University of Manchester. Suzanne Parsons is the Project Manager for the needs assessment work package of the European Patients' Academy on Therapeutic Innovation project. Suzanne is a social scientist and health services researcher who has worked predominantly within the Univeresity, NHS and non-governmental sectors. Her research interests include patient and public involvement in healthcare and clinical research and patient experience.

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Starling ~ Bella

Co-Academic Lead, EUPATI-UK Senior Management Committee and Director of Public Programmes at Nowgen, Central Manchester NHS Trust and University of Manchester, where she leads and directs Nowgen's work in public engagement, involvement and education as well as patient-focused research. Bella is a member of the Emerging Sciences Bioethics Advisory Committee (ESBAC), the Medicines and Healthcare Products Regulatory Agency's (MHRA) Patient and Public Engagement Expert Advisory Group and the North West People in Research Forum Executive Committee.

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