Our work

Harmonize and Synergize Patient Engagement and Patient Experience Data

Clarifying, integrating and streamlining the design, generation, analysis and decision making about patient experience data through, and with, patient engagement


Why is this project important

Practising Patient Engagement & Patient Experience Data (PED) raises new questions and needs that require collaborative solutions

The generation and collection of data from patients’ experiences across all aspects of their lives (referred to as Patient Experience Data (PED)) is emerging as a critical aspect in research and healthcare to deliver evidence-based patient unmet needs, health outcomes and impact.

PED is not exclusive to patient engagement, but complementary, and is needed to build a patient-centred, comprehensive and robust data resource that can be used by all stakeholders in the health ecosystem.

Needs have been expressed by all stakeholders and regulators (such as EMA) are laying the foundation towards guidance to sponsors.

Who should be involved



Patient Organizations


Healthcare Professionals



Health authorities
(including regulators and health
technology assessment and reimbursement bodies)
Aligning globally between stakeholders and different applications (e.g. devices or medicines approval and reimbursement) is needed to avoid a fragmented approach, streamline efforts and avoid divergence and/or duplication.

How will the project advance

In collaboration with NHC we are organizing an overview of related stakeholders, experiences and initiatives integrating patient engagement and PED, guidances and reports.

This work considers the needs and interests of each of the stakeholders involved, providing the opportunity to optimize and streamline patient engagement and data collection.

The vision is to enable the collection of patient experience data which highlights the unmet needs critical to inform decision making throughout the product lifecycle and the health system. Data generation and collection are better designed and further enriched through patient engagement and contribution of patient expertise throughout the process.

What will the project achieve?


Articulate the Common Rational for Patient Engagement & PED Clarity and Start Identifying and Developing Good Practices

This project will consider stakeholder learnings and experiences with the integration of patient engagement design of PED to decision making. An initial analysis will help to inform to co-creation of a vision for patient engagement and PED in R&D lifecycles in health systems, building a foundation for 3 primary outcomes.

Patient Engagement & PED Common Rational Awareness and Call to Action (CTA) publication

The overlapping needs and methods for patient engagement and PED amongst HTAs, regulators, patients, researchers, industry and other stakeholders will be identified to develop a CTA publication.

PED Global Taxonomy

Co-creation of a global taxonomy to support all stakeholders in the integration of patient engagement and patient engagement development.

Patient Engagement & PED Roadmap – From Design to Decision Making WITH Patients

Building from the foundation of the CTA publication, and working to identify good practices to overcome gaps and challenges.