Boehringer launches hub for patient experience data

Generating good-quality patient experience data (PED) is becoming increasingly important for medicine development, and Boehringer Ingelheim has launched a hub to help patient organisations gather it effectively.

PED – which Boehringer describes as "direct insights that patients provide on their symptoms, quality of life, treatment preferences, and unmet needs" – is also becoming a focal point for regulators, including the EMA, which is currently looking into how it could be incorporated into medicine development programmes and marketing authorisation applications.

The new e-learning hub, PED Essentials, is an online resource, co-created with patients and subject matter experts, that aims to help patient organisations gather and organise PED, share it with healthcare stakeholders, and use it as a tool for their advocacy.

"Helping patients generate PED could catalyse a new chapter in healthcare innovation," according to Lykke Hinsch Gylvin, Boehringer's chief medical officer and head of global medicine.

"Patients and caregivers bring lived experiences and perspectives that even the most experienced clinicians and scientists cannot fully capture," she added. "It's an essential component of our integrated-evidence strategy and helps us develop medicines that drive better health outcomes."

The EMA published a reflection paper on PED last year that encouraged medicine developers to embed this type of data across all stages of the process, asking them to liaise with it as early as possible to enable case-by-case discussions on specific development plans and regulatory submissions.

It said that PED provides important insights into "patients' expectations, preferences, and values," but needs a framework for qualitative and quantitative analysis. Final guidance is expected to be published soon.

Boehringer said that PED Essentials has grown out of its Real Voices, Better Choices white paper, which was developed with patient experts to support health system leaders and advocates in formalising patient participation in healthcare decision-making.

"My hope is that PED Essentials will support patient organisations in turning insights about patient needs and experiences into evidence that informs healthcare decision-making and strengthens advocacy," said Vanessa Pott Semêdo, Boehringer's head of global patient engagement.

"More broadly, PED Essentials reflects the future of patient engagement," she added. "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'."