Setting out The Need for Patient Involvement
23 July 2014, held at Bayer Healthcare, Berlin, Germany
This meeting was about taking concrete actions that help support patient involvement in research and development (R&D), said Nicola Bedlington, Executive Director, European Patients’ Forum at the opening address of the workshop.
Nicola outlined the explicit and implicit objectives of EUPATI as the starting point for our discussions. Through empowering patients to be involved at all stages of R&D and building capacity among the advocate community there is an opportunity to make patient centricity in R&D a reality.
To achieve this goal it is important that all stakeholders come together to implement true partnerships aimed to address common goals. This workshop focused on the need to involve patients and advocates actively and systematically at all stages of the R&D process. The EUPATI partners are ideally placed to make this a reality and have a fundamental role to play in creating a positive environment for all stakeholders.
During the day, every attendee would attend three breakout sessions designed to explore the benefits of patient and advocate involvement, the current barriers that exist and the relevant compliance codes and frameworks that need to be updated to enable smooth and transparent partnerships with patients and advocates during the research and development process. Best practice examples formed the basis of these discussions, allowing the participants to explore the lessons from these real-life examples and identify the approaches that made them successful.
A summary of these three sessions is contained in the attachments at the bottom of this page. Full detailed notes were made during each breakout session.
These will form the basis for discussions within the small groups being formed to drive the key activities forward.
Prioritised Actions and Next Steps
The participants came together in the final session to discuss the outcomes of each of the three workshops and identify the priority activities that should be implemented.
After a discussion of the issues and solutions identified during the day, all the potential activities were presented for a group vote. From this vote, the key activities identified were. Summary Report – EUPATI Patient Involvement Workshop, Berlin – 23 July 2014 2/8
- Clearly make the case for patient involvement in medicines development: Working group to scope out key actions to document and communicate the impact and benefits including health, societal and business benefits of patient involvement in medicines development to all key stakeholders. This will involve creating a platform for sharing case studies of good practice and developing training for industry and regulators on the value of patient engagement
- Develop a framework for patient involvement: With the goal being to develop one set of guidelines for all parties (including regulators). A small group will be created to assist in reviewing the codes and making recommendations.
- Outline the steps needed to involve patients and advocates: Create a simple ‘how to’ check list for patient involvement in each phase of R&D
- Create key performance indicators for patient involvement: Develop measures that cover quality, quantity and speed
- Create SOPs and guidance for good practice
- Develop EUPATI matchmaking as broker for patients and research
- Bring stakeholders such as regulators into the discussion: Bring regulators into the working groups on ‘How and ‘Why’ work streams so that they co-create the solutions we develop.
Workshop Summary Report
- Eupati: Patient Involvement in Industry R&D. Workshop Summary Report
Size: 481,196 bytes, Format: .pdf
SUMMARY REPORT of the EUPATI workshop held with 56 representatives from our industry and patient organisations on 23 July 2014 in Berlin. This meeting was about taking concrete actions that help support patient involvement in research and development.
Workshop Case Reports
- Eupati: Patient Involvement in Industry R&D. Case Reports
Size: 911,430 bytes, Format: .pdf
CASE REPORTS of the EUPATI workshop held with 56 representatives from our industry and patient organisations on 23 July 2014 in Berlin. This meeting was about taking concrete actions that help support patient involvement in research and development.