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- Patient experience data (PED) are direct insights that patients provide on their symptoms, quality of life, treatment preferences and unmet needs.
- PED Essentials is an online learning hub, co-created with patients and subject matter experts to provide foundational PED knowledge.
- The launch is timely as the Europeans Medicines Agency (EMA) progresses work on its landmark reflection paper on PED, highlighting growing regulatory recognition of patient experience as an important source of evidence.
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Ingelheim, Germany – Boehringer Ingelheim today announced the launch of PED Essentials, a comprehensive e-learning hub designed to help patient organizations generate high-quality patient experience data (PED), share these insights with healthcare stakeholders and analyze existing PED as an evidence base for advocacy.
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The learning hub comes at a pivotal moment for healthcare. There is growing recognition that lived experience is a critical form of evidence, and medicines, policies and healthcare services should be informed by patient insights and preferences. This shift is creating a greater need for patient organizations to capture and communicate patient insights in a robust and well-documented way. PED Essentials is designed to help them meet this need. It is freely available at www.pedessentials.com.
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“Helping patients generate PED could catalyze a new chapter in healthcare innovation. Patients and caregivers bring lived experiences and perspectives that even the most experienced clinicians and scientists cannot fully capture,” said Lykke Hinsch Gylvin, Chief Medical Officer and Head of Global Medicine at Boehringer Ingelheim. “It’s an essential component of our integrated-evidence strategy and helps us develop medicines that drive better health outcomes.”
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Advancing evidence-based patient advocacy
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The launch of PED Essentials builds on the Real Voices, Better Choices whitepaper, developed with patient experts to support health system leaders and advocates in formalizing patient participation in healthcare decision-making.
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“My hope is that PED Essentials will support patient organizations in turning insights about patient needs and experiences into evidence that informs healthcare decision-making and strengthens advocacy,” said Vanessa Pott Semêdo, Head of Global Patient Engagement at Boehringer Ingelheim. “More broadly, PED Essentials reflects the future of Patient Engagement. When healthcare decisions are informed by robust evidence about patient needs and experiences, we can move beyond assumptions and develop better solutions for patients, healthcare systems and innovators alike. That is what we call ‘patient-powered progress.’”
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The timing is significant. Regulators, Health Technology Assessment (HTA) agencies and payers globally are advancing frameworks that increasingly recognize patient experience as an important source of evidence:
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