A Look at Boehringer’s Patient Experience Data Platform

Patient experience is increasingly being recognised as an important part of the evidence used to shape medicines and healthcare decisions.

Now, Boehringer Ingelheim is looking to support patient organisations in generating and using that evidence, with the launch of PED Essentials, a free online learning hub designed to help these organisations generate high-quality Patient Experience Data (PED).

PED captures direct insights from patients about areas including symptoms, quality of life, treatment preferences and unmet needs. 

The European Medicines Agency (EMA) says such data can provide insights into what matters most to patients beyond established scientific outcomes, and can complement evidence generated through clinical trials and other sources.

The launch comes as regulators continue to develop frameworks for incorporating patient perspectives into medicines development and regulatory decision-making.

In September 2025, the EMA published a draft reflection paper on PED for public consultation. The paper encourages medicines developers to consider patient experience data throughout the lifecycle of medicines, from development and benefit-risk evaluation through to post-authorisation.

Turning lived experience into evidence

Boehringer Ingelheim’s interactive e-learning hub has been designed to help patient organisations generate high-quality PED, communicate these insights to healthcare stakeholders and analyse existing data as an evidence base for advocacy.

Lykke Hinsch Gylvin, Chief Medical Officer and Head of Global Medicine at Boehringer Ingelheim, explains that patient and caregiver perspectives can offer insights that may not be captured through clinical or scientific data alone.

“Helping patients generate PED could catalyse a new chapter in healthcare innovation,” she says. “Patients and caregivers bring lived experiences and perspectives that even the most experienced clinicians and scientists cannot fully capture.”

Lykke also expanded on the role of patient evidence in a LinkedIn post announcing the launch of PED Essentials. “Lived experience can provide insights that clinical data alone cannot: what it is really like to live with a condition, navigate treatment and manage everyday challenges,” she writes.

Her comments point to a wider shift in the way patient engagement is being positioned – from consultation towards evidence generation.

“Patient expertise belongs alongside clinical, scientific and regulatory expertise, with a role to play wherever evidence is generated and priorities are set. Patient perspectives deserve more than a place in the conversation. They deserve a place in the evidence base,” Lykke adds.

A shifting regulatory environment

The development of PED Essentials comes as regulators and health technology assessment bodies place increasing emphasis on understanding patient priorities.

The EMA’s reflection paper says patient experience data can include Patient Reported Outcomes, Patient Preference Studies and information generated through patient engagement activities.

It also identifies potential PED sources ranging from clinical trials and real-world data to mobile health technologies and social media.

The agency says PED can be particularly valuable where patients may place different priorities on outcomes than those traditionally captured through clinical endpoints, such as prioritising quality of life over overall survival.

The agency's draft framework also encourages developers to engage with regulators early when considering the inclusion of PED in medicine development programmes and marketing authorisation applications.

Co-created with patient organisations

Boehringer Ingelheim says the origins of PED Essentials can be traced to its 2023 Global Patient Partnership Summit, where patient delegates highlighted a lack of confidence around generating, analysing and submitting high-quality PED.

They also identified existing educational resources as fragmented and difficult to access.

In response, Boehringer Ingelheim developed a Patient Experience Data Resource Finder, bringing together existing learning materials in one place.

The company has now worked with Patvocates, a patient-led consultancy, to develop PED Essentials as a more interactive learning platform.

The resource was co-created with the patient community through surveys, a patient-led steering committee and an editorial board of community experts, with the aim of ensuring that the content is relevant and accessible to patient organisations.

Vanessa Pott Semêdo, Head of Global Patient Engagement at Boehringer Ingelheim, says: “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.’”

Boehringer Ingelheim - key partners

Patvocates

CEO: Jan Geissler | HQ: Riemerling, Germany

Patvocates is a patient-led consultancy focused on meaningful, structured and ethical patient engagement. Boehringer Ingelheim collaborated with Patvocates to develop PED Essentials, bringing patient expertise into the design of the learning platform. Its work centres on helping healthcare, pharmaceutical and research organisations incorporate patient perspectives and lived experience into decision-making and evidence generation.

Eli Lilly

CEO: David Ricks | HQ: Indianapolis, Indiana

Boehringer Ingelheim and Eli Lilly have maintained a strategic alliance in diabetes since 2011, combining their expertise to develop and commercialise medicines including Jardiance. The companies subsequently modernised the alliance to focus their combined investment on Jardiance across type 2 diabetes, heart failure and chronic kidney disease.