Patients as partners in research: making co-production “the new normal”

Patients are increasingly becoming not only research subjects but also co-researchers, and even drivers of the research agenda. Research with patients, driven by patients’ real-life unmet needs and priorities, can deliver high-value, sustainable solutions. This session will explore the opportunities of doing research “with” as well as “for” patients, looking at innovative examples from therapeutic research and development, but also at the wider context of health and the role of patients in setting research priorities. Participants will then contribute to the development of a patient-led framework on Meaningful Patients Involvement in Health Systems.

The morning will be spent with the speakers introducing how patient involvement is currently practiced by different stakeholders and how it is envisioned for the future, followed by small group discussions to frame the afternoon’s work. In the afternoon participants will co-develop a patient-led framework on meaningful patient engagement, leveraging the discussions and presentations from the morning, as well as building on existing insights of different patient engagement frameworks.

This session has been co-developed between EPF and VU-Athena.

Session moderators:

• Matthew May, Programme Coordinator, European Patients’ Academy (EUPATI), EPF
• Mathieu Boudes, IMI-PARADIGM Coordinator, EPF
• Jacqueline Broerse, Professor Innovation and Communication in health and life -ciences, VU Athena
• Carina Pittens, Assistant Professor of Patient involvement in health research, policy-making and care practice, VU-Athena

Speakers:

• Tamara Hussong Milagre, President, EVITA, European Reference Network GENTURIS
• Tessa Richards, Senior Editor patient partnership, BMJ
• Anne-Charlotte Fauvel, Head of EU Affairs, European Infrastructure for Translational Medicine (EATRIS)
• Camilla Krogh Lauritzen, Chief Patient Officer, Leo Pharma