OUR WORK
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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Quick Links
CONTEXT
Discover the reason behind the Patient Engagement & Patient Experience Data initiative
Explore all the past PED PEOF session materials.
NAVIGATE
Ready to work with Patient Experience Data?
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?
-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?
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?
50+ people from 32 organizations (patients, patient advocates, regulators, industry and more) collaboratively worked on:
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
About the whitepaper “Trends in the Fast-Evolving Patient Engagement & Patient Experience Data Landscape paper”
Multiple organizations and stakeholder groups progress in addressing the gaps that still exist with engaging patients. Some trends we have observed so far:
Regulators and HTA bodies are increasingly embracing patient experience data to help their decision-making
Current regulatory and HTA guidances are setting expectations for evidence generation
Clarity and definition of patient experience data will help to broaden its development and use
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
UPCOMING PROJECTS
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 in 2023
