PARADIGM Patient Engagement Toolbox Co-created recommendations, tools and relevant background information to make patient engagement in medicines development easier for all Discover the PE Toolbox PARADIGM, Patients Active in Research and Dialogues for an Improved Generation of Medicines Advancing meaningful patient engagement in the life cycle of medicines for better health outcomes. Resources Discover below the resources produced by the PARADIGM consortium. From project deliverables to videos and publications, this is the go to place to keep up to date with the project advancements. Find out more The PARADIGM International Liaison Group The PILG enables synergies – such as the identification of existing practices – aligned with PARADIGM’s scope. Find out more Project partners PARADIGM has 34 consortium members. Meet the partners

PARADIGM is a public-private partnership and is co-led by the European Patients’ Forum and EFPIA.

PARADIGM’s mission is to provide a unique framework that enables structured, effective, meaningful, ethical, innovative, and sustainable patient engagement (PE) and demonstrates the ‘return on the engagement’ for all players.

The objective is to develop much needed processes and tools for three key decision-making points: research priority setting, design of clinical trials and early dialogue. Building on advances at international level, PARADIGM will integrate the needs, perspectives and expectations of all actors (including vulnerable populations) involved and will also produce a set of metrics to measure the impact of patient engagement.

Project objectives

Needs and expectations

Strengthen the understanding of stakeholders’ needs and expectations for engagement (including underrepresented and vulnerable populations);

Sustainability roadmap

Develop an inventive and workable sustainability roadmap to optimise patient engagement in key decision-making points across medicines’ R&D;

Maximum synergies

Ensure maximum synergies with other initiatives focusing on the patient’s voice in the life cycle of medicines, like Patient Focussed Medicines Development (PFMD) or the European Patient Academy on Therapeutic Innovation (EUPATI).

Agreed metrics

Develop agreed patient engagement metrics to increase evidence demonstrating the impact of patient engagement practices;


Strengthen systems-readiness towards patient engagement across the diverse range of stakeholders that develop, regulate and assess medicines;

Start date of the project: 01.03.2018 / End date of the project: 31.08.2020

PARADIGM will help to change the landscape of meaningful patient engagement in the life-cycle of medicines – both in practical terms, but also crucially in terms of mindset and commitment. For the European patient community, our members and our partners this represents, literally, a very timely paradigm shift, and goes hand in hand with the universal recognition of the importance of patient education, as demonstrated by EUPATI, and a similar need to embed patient involvement in wider health systems’ design and strengthening- another key pillar in truly advancing patient centred, quality and sustainable care.

Nicola Bedlington, Secretary-General
Nicola Bedlington, Secretary-General
European Patients’ Forum

Real long-lasting change can only happen when all stakeholders join forces. By working together with all our partners we now have an opportunity to make patient involvement a consistent, sustainable and valuable reality so that we provide the best possible outcome and experience to those we serve.

Matthias Gottwald
Matthias Gottwald
Head of R&D Policy and Networking, Bayer AG

“Nothing about us without us”. This slogan has been at the basis of the GIPA principle which encouraged stakeholders to include PLHIV within their projects, programs, research etc. The PARADIGM project goes along the same way by empowering patients to become actively involved in medicine development and the search towards better health outcomes. For EATG it felt like a logical step to join a project that supports the same values and principles as GIPA.

Koen Block, Executive Director
Koen Block, Executive Director
The European AIDS Treatment Group

Novartis is strongly committed to helping lead the change required to ensure patients get the innovative medicines they need. PARADIGM offers a unique opportunity as it includes all the relevant stakeholder groups needed to discuss and co-create the best solution, which centrally positions the voice of the Patient.

Laura McKeaveney
Laura McKeaveney
Global Head of Patient Advocacy, Novartis

PARADIGM’s mission reflects our Patients in Partnership approach at GSK. Through our involvement in this new Innovative Medicines Initiative (IMI) project, we support the movement to advance meaningful patient engagement in the life cycle of medicines for better health outcomes, and the value this can bring to patients.

Kay Warner
Kay Warner
Patient Engagement Lead, GSK
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