PE & PED Integrated Navigator - Public Consultation

Introduction

The PFMD Patient Engagement & Patient Experience Data Project: Why it is crucial to involve patients in PED processes

Engaging the patient community in the generation and use of patient experience data (PED) is critical for addressing unmet patient needs, facilitating evidence-based decision-making in healthcare, and driving improved health outcomes. The Patient Engagement & Patient Experience Data project is a global multistakeholder initiative, that aims to support the integration of patient engagement (PE) and PED to generate more meaningful insights for healthcare decision-making. It is one project within Patient-Focused Medicines Development (PFMD) whose mission is to co-design the future of healthcare with patients, bringing together best practices and frameworks that involve patients as partners to enhance global health outcomes.

Review the proposed structure of the PE & PED Integrated Navigator in the one-pager: https://patientfocusedmedicine.org/wp-content/uploads/2024/08/PE-PED_Integrated-Navigator_Public-Consultation.pdf

Visit the PE & PED webpage to learn more!

https://patientfocusedmedicine.org/patient-experience-data/

Question Title

* 1. What group or affiliation best describes you?

Patients and caregivers

Patient advocates, patient organizations and associations

Healthcare professionals

Pharmaceutical companies or biotech industry

Medical Devices industry

Academia and researchers

CRO/ Service providers

Research Funders

Publishers

Policy makers

Regulators

Payers

Health Technology assessment (HTA) organizations

Scientific writers in communication agencies

Scientific/medical editors

Other (please specify)

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* 2. Where are you located?

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* 3. How extensive is your experience with patient engagement, which refers to the active and meaningful involvement of patients in their own healthcare and collaboration with healthcare providers to enhance outcomes and satisfaction?

Please choose from the following options:

Advanced Patient Engagement Expertise (i.e., extensive experience in PE activities, including contributing to leadership or strategic functions on PE projects. Strong familiarity with PE best practices.)

Intermediary Patient Engagement Expertise (i.e., regular participation in PE activities but typically not in a leadership role. Some familiarity with PE best practices.)

Beginner Patient Engagement Expertise (i.e., limited or no experience in PE activities. Learning or unfamiliar with PE best practices.)

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* 4. How much experience do you have with Patient Experience Data (PED)?

Patient Experience Data is the term used to describe evidence which captures patients full day-to-day experience of their medical condition. Patients experience the daily ups and downs of their medical care and how the condition impacts their everyday life.

Advanced Patient Experience Data Expertise (i.e., extensive experience in designing and executing Patient Experience Data (PED) studies, with a high level of familiarity with PED generation and application)

Intermediate Patient Experience Data Expertise (i.e.,experience participating in PED studies, with a moderate level of familiarity with PED and its generation and use)

Beginner Patient Experience Data Expertise (i.e.,limited or no experience with PED studies, and minimal familiarity with PED generation and application)

25% of survey complete.

Question Title

Question Title

* 1. What group or affiliation best describes you?

Question Title

* 2. Where are you located?

Question Title

* 3. How extensive is your experience with patient engagement, which refers to the active and meaningful involvement of patients in their own healthcare and collaboration with healthcare providers to enhance outcomes and satisfaction?Please choose from the following options:

Question Title

* 3. How extensive is your experience with patient engagement, which refers to the active and meaningful involvement of patients in their own healthcare and collaboration with healthcare providers to enhance outcomes and satisfaction?

Please choose from the following options: