Discover how Patient Engagement and Patient Experience Data are closely linked

Patient engagement (PE) and Patient Experience Data (PED) are emerging as a critical aspect in research and healthcare to deliver evidence-based patient unmet needs, health outcomes and impact.

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What’s hot when it comes to Global Patient Experience Data?

Exploring together the connection between Patient Engagement and Patient Experience Data

With patient engagement, we make sure we are asking the right questions when generating and using patient experience data.

Patient engagement also helps us understand and interpret Patient Experience Data with a comprehensive and nuanced lens to show the issues that are most important to the patients.

What is Patient Engagement?
“Patient engagement is the holistic engagement of patients as active stakeholders through all the health journey and systems. Patients are involved systematically as key partners from the onset of the research level to the end of the drug and tools development, not just as a passive research subject.”
-National Health Council, (2017).

“Importantly, patients should be treated “as valued and valuable partners whose input, advice, and guidance is sought and implemented” throughout these processes.”
-National Health Council, (2017).

Want to learn more about patient engagement?

What is Patient Experience Data?
Patients have the full day-to-day experience of their medical condition.
They experience the daily ups and downs of their medical care and how the condition impacts their everyday life. Patient Experience Data is the term used to describe evidence which captures all of these experiences. Healthcare research can use this evidence to design better ways of managing a person’s condition and providing the most appropriate care.

Why is Patient Experience Data essential for the health system advancement?

Tools to navigate the PE and PED landscape and how to perform PE & PED generation effectively. 

Co-created by more than 300 experts from over 50 organizations, these tools are accessible to all stakeholders. Explore now.

Demonstrating  the value of Patient Engagement in the design, generation & analysis of Patient Experience Data

Exploring the trends and increasing consideration of PE and PED by regulatory and Health Technology Assessment agencies

Adding clarity on the what, how, who, when and why of patient experience data

About the publication “Building from Patient Experience to Deliver Patient-Focused Healthcare Systems in Collaboration with Patients: A Call to Action”

The material:

Calls attention to the benefit and necessity of engaging patients in the design, generation, and use of PED for the co-creation and meaningful contextualization of PED

Highlights the collective value of PED amongst healthcare decision-makers and the need for multi-stakeholder collaboration to decrease both systemic inefficiencies and the burden on patients

The peer-reviewed publication is a significant milestone for the patient engagement community.

It highlights the growing recognition from decision-makers, specifically regulatory and HTA agencies, who are now placing heightened emphasis on PE & PED.

It helps to identify evolving resources by geographical region to support and highlight the need to integrate PE and PED in regulatory and health technology assessments

It demonstrates rapidly increasing interest in PE, PED, and guidance on their use individually in decision-making.

It signifies that more work is needed to offer guidance on maximizing patient input’s value in decisions by combining PE and PED into regulatory and HTA processes.

About the Global Patient Experience Data Navigator

Adding clarity on the what, how, who, when and why of patient experience data

Identifying approaches to prioritize the impacts that are most important and meaningful to patients

Reviewing the tools and methods available to measure outcomes of the impacts that are most important to patients and identify possible gaps

About the Global Patient Experience Data Navigator

Adding clarity on the what, how, who, when and why of patient experience data

Identifying which stakeholders are using PED, and how it is being used

Understanding the impact of this data on healthcare, and product development, decision-making


Coming soon

A dynamic tool, building on the Global PED Navigator, that illustrates how and when patients can be engaged in the generation and use of patient experience data.

Peer-reviewed publications to increase the awareness of PE & PED integration for healthcare decision-making

Sponsors that make this work possible

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