Together for improved evidence generation and healthcare decision-making for, and with patients

Discover the first co-created Global Patient Experience Data Navigator now

Patient Engagement and Patient Experience Data Fusion

A meaningful approach for the future of healthcare decision making

Patient Experience Data is emerging as a critical aspect of research and healthcare. It can help identify unmet patient needs, desired health outcomes and impacts that are most meaningful to patients.

That’s why the Global PED Navigator was developed. The aim: provide an all-encompassing guide for PED collection and understanding, starting from the FDA definition.

Check out the latest publication of a peer-reviewed article detailing the development process and structure of the Global Patient Experience Data Navigator. It demonstrates rapidly increasing interest in PED generation and its potential use in decision-making.

Patient Engagement is essential for Patient Experience Data in order to build a patient-centred, comprehensive and robust data resource that can be used by all stakeholders in the health ecosystem. Specifically, patient engagement is needed to help with the co-creation and design of Patient Experience Data and also to contextualize and add meaning to the collected Patient Experience Data.

Therefore, the solution is to aim for a fusion between Patient Engagement and Patient Experience Data, as seen below.


The Global Patient Experience Data Navigator

A co-created dynamic tool for clarity and understanding of the generation and use of Patient Experience Data (PED)


About the tool

Anyone can use the Global PED Navigator to:

  • ensure that PED highlights the needs that are most important and meaningful to patients
  • review the tools and methodologies available to measure these patient experiences and identify possible gaps
  • identify what stakeholders are using PED, and how it is being used
  • better understand the impact of this data on healthcare, and product development, decision-making

Find out more in the latest publication detailing the Co-creation of the Global Patient Experience Data Navigator.

Contribute to the future of Patient Experience Data usage

Explore the Navigator and contact us if would like to know more.

The structure of the Patient Experience Data Navigator

1. Introduction, context and methodology

4. Tool to identify PED use per stakeholder throughout the product development cycle

2. Tool to identify the approaches to determine what impacts matter most to patients & families

5. Tool to identify PED use per stakeholder throughout the healthcare process

3. Tool to select appropriate measurement methods of outcomes that matter most to patients & families

6.Glossary of commonly used terms in PED and Patient Engagement


A robust methodology for an effective, comprehensive and standardized approach to Patient Engagement and Patient Experience Data

The Global Patient Experience Data Navigator has been developed based on a co-creation model consisting of three main phases: co-development, validation and formalization.

Co-creation has been driven within a 30+ person working group of experts from diverse backgrounds. This allowed the group to foster collective insights and intelligence from multi-stakeholder representatives and work towards building a common solution that would meet all needs.
Validation was a key moment in the co-creation process and it allowed us to identify the convergence point(s), show progress towards the project goal, and reach intermediary solutions that could facilitate broader understanding and a more agile adoption.
Formalization then took place, with the collected insights from the working group. Now the cycle begins again, but with a wider group.

People and organizations behind this tool

This resource was co-developed in a multi-stakeholder working group representing patients, patient organizations, regulators, HTA bodies, healthcare professionals, academia, pharmaceutical companies, and external experts. Special thanks to everyone involved in drafting, editing, reviewing, and maintaining momentum to deliver the resource.

The “Patient Engagement Management Suite” is brought to you by the PFMD partnership.