• 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.

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.

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.

“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.”

Advancing evidence-based patient advocacy

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.

"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.'"

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:

• In September 2025, the EMA published a landmark reflection paper on PED, with final guidance expected soon.
• The U.S. Food and Drug Administration (FDA) continues to advance Patient-Focused Drug Development and is further strengthening guidance on the use of patient experience and preference information in regulatory decision-making.
• Agencies such as the UK's National Institute for Health and Care Excellence (NICE) and Canada's Drug Agency (CDA-AMC) increasingly incorporate patient evidence into HTA and reimbursement assessments.

Together, these developments signal a decisive shift: patient perspectives are no longer optional – they are becoming an increasingly important component of regulatory, value assessment, and reimbursement decision-making. For patient organizations, this creates new opportunities to generate and use robust patient experience data to support their priorities and advocacy goals.

A co-created resource

At Boehringer Ingelheim's 2023 Global Patient Partnership Summit (GPPS), patient delegates identified a lack of confidence in generating, analyzing, and submitting high-quality PED. They also highlighted that existing learning materials were fragmented and difficult to access. To address this, Boehringer Ingelheim partnered with patient experts to curate existing PED learning resources into the PED Resource Finder, creating a centralized overview.

Building on this foundation, Boehringer Ingelheim collaborated with Patvocates, a patient-led consultancy, to develop PED Essentials – an interactive, multimedia e-learning platform designed to close gaps in existing learning materials. The platform was co-created with the patient community through surveys, a patient-led steering committee, and an editorial board of community experts to ensure relevance, accessibility, and quality.

Further information

Patient organizations and patient advocates are invited to join the PED Essentials launch webinar on September 17. Register here. 

Session 1:

08:00-09:30 Ingelheim | 10:00-11:30 Dubai | 15:00-16:30 Tokyo | 16:00-17:30 Sydney

https://eu02web.zoom.us/meeting/register/Ufagv_eYTq66chOQjLT1Hw#/registration

Session 2:

07:30-09:00 Pacific | 10:30-12:00 Eastern | 15:30-17:00 London | 16:30-18:00 Ingelheim

https://eu02web.zoom.us/meeting/register/TqxVNTqnQF-T9vAUPNFW2g#/registration

Boehringer Ingelheim

Boehringer Ingelheim is a biopharmaceutical company active in both human and animal health. As one of the industry's top investors in research and development, the company focuses on developing innovative therapies that can improve and extend lives in areas of high unmet medical need. Independent since its foundation in 1885, Boehringer takes a long-term perspective, embedding sustainability along the entire value chain. Our approximately 54,300 employees serve over 130 markets to build a healthier and more sustainable tomorrow. Learn more at www.boehringer-ingelheim.com.