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There is a lot of buzz around "patient centricity", even to the point where patient engagement was recently quoted during a patient summit as ‘the blockbuster drug of the century’. Within the European Patients' Academy we recognise that much still needs to be done to involve patients in research and development (R&D) in a systematic and meaningful way, especially as the first EUPATI trainees will complete their course in autumn 2015 and will be seeking these opportunities.

As a public-private partnership, EUPATI is ideally placed to further the dialogue around the strategy for increasing patient involvement in industry-led R&D.  Seizing on this, EUPATI hosted a workshop 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. 22 case studies from the areas of rare diseases, paediatrics, oncology, neurological diseases and HIV 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.   Three breakout sessions explored 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.

Read the full workshop report here.

Read the workshop's case reports here.

It became very clear how important it is to share, collaborate, guide and advocate (to the outside world, but also within companies and institutions) in order to move patient involvement in R&D from theory and single initiatives into widely adopted practice.

The participants came together in a final session to discuss the outcomes and identify priority activities that should be implemented. After a group vote, the key activities identified were:

  • Develop a framework for patient involvement: With the goal being to develop one set of guidelines for all parties (including regulators).
  • Clearly make the case for why patient involvement benefits research: Working group to scope out key actions to document and communicate the impact and benefits of patient involvement
  • 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.

A number of volunteers are now scoping these various activities to move them forward as actions over the coming months. Through empowering patients to be involved at all stages of R&D and building capacity among all stakeholders there is an opportunity to make "patient centricity" in R&D a reality.

Patients have a lot to contribute, and the European Patients' Academy is working hard to empower them to do so.