Patient-powered progress: How Boehringer Ingelheim and patients work together to improve the patient experience

Human Health

7min

Across health systems, many decisions are still made without the people who live with the consequences. This shows up in trial criteria that miss the right patients, in protocols that overlook side effects that reshape daily life, and in access rules that ignore what matters to families. Boehringer Ingelheim is changing that by putting lived experience at the center of how innovation moves forward.

Patient-powered progress is a movement

“We need to approach patient-powered progress as a movement, not a moment,” says Vanessa Pott Semêdo, head of global patient engagement at Boehringer Ingelheim, regarding how to improve the patient experience. “Piecemeal patient engagement doesn’t deliver value. Breakthroughs for patients, industry, and society at large follow when we partner with patients as equal stakeholders, when we actively listen to their perspectives—and when we act on their insights. That’s patient-powered progress.”

At the heart of this commitment to patient-powered progress is a deep appreciation for patients’ lived experience of disease. As Vanessa explains: “I don’t even like the label ‘patients.’ It can be patronizing and alienating. It places patients apart. In reality, we’re all patients. At some point, each of us has needed medical care. We all have first-hand experience of illness and treatment, and that knowledge matters. When combined with the scientific expertise of clinicians and researchers, it creates a fuller understanding—one that leads to faster, more accurate diagnoses and more effective care plans.”

We all have first-hand experience of illness and treatment, and that knowledge matters.

Vanessa Pott Semêdo, head of global patient engagement at Boehringer Ingelheim

A long-term commitment that drives better patient experience

As a family-owned company, we can take a long-term approach by investing in patient-centric practices that take time to build but drive durable impact. This is evident in how we leverage patient experiences to set research priorities, guide our integrated evidence planning, and design trials that demonstrate clinical efficacy and impact on people’s quality of life.

Patient experiences also inform the resources we co-create. For instance, during our 2021 Global Patient Partnership Summit, patient groups told us that medical devices commonly provide a poor user experience. Based on this feedback, we co-developed the Device Development Blueprint for equipping medical device developers to put the user experience at the forefront of design for improved patient satisfaction.

Drugs developed using patient-centric designs are

19%

more likely to be launched than drugs developed without such designs.

Leaning on Patient Experience Data (PED) and helping patient groups develop their PED capabilities is a strategic priority. At our 2025 Global Patient Partnership Summit, patient experts and our teams alike described PED as a “superpower.” Vanessa agrees: “For patient organizations, PED underpins advocacy with evidence—which bolsters their case and fast-tracks change. For Boehringer, PED roots our innovation in real-world experiences, helps us design targeted treatments and improve adherence. PED is a mutual necessity.”

Patient experience data is the truth of a condition

Christine Cockburn, CEO of Rare Cancers Australia, captures it well: “Patient experience data is the truth of a condition or a lived experience. Without it, we’re just guessing. We’re going ahead developing programs, medicines or services without really understanding what’s truly going on.”

Yet patient organizations from our Global Patient Partnership Community also told us that PED learning resources were scattered and difficult to find. As such, they lack confidence to generate and submit PED.

To change this, we partnered with patient advocates to create the PED Resource Finder, a simple tool that collates existing materials. We are now working on a solution that will address some of the training gaps that still exist, to empower patient organizations to generate evidence-based insights and advocate persuasively for their communities.

Turning patient engagement into policy impact

Stronger PED capabilities alone are not enough if patient organizations lack access to the forums where decisions are being made to present their evidence. Patient participation in policymaking still varies widely between countries, and genuine engagement requires institutions to act on lived experience.

It’s not about having patients at the end of the discussion but creating a whole new table to find solutions.

Nadiah Hanim Abdul Latif, president of the Malaysian Rare Disorders Society (MRDS)

You have to have patients at the center, from advocacy to design of care programs.

Chris Forbes, CEO Kidney Health Australia

Patient experience data is the truth of a condition or a lived experience.

Christine Cockburn, CEO Rare Cancers Australia

The earlier you get patients involved in research, the better the health outcome will be.

Ron Flewett, IPF patient ambassador

At the 2025 Global Patient Partnership Summit, Nadiah Hanim Abdul Latif, president of the Malaysian Rare Disorders Society (MRDS), spoke plainly: “It’s not just about having patients at the end of the discussion with a tokenistic seat. It’s about creating a whole new table, so new solutions can be found. Nothing about us, without us.”

This spirit is reflected in our whitepaper Real Voices, Better Choices, co-created with a patient editorial board and input from 50 patient experts. It provides practical advice, best practice examples, and calls-to-action for policymakers and advocates.

When people with lived experience are part of policymaking, the results speak for themselves. Policies designed and shaped with patient input reflect real needs, make better use of resources, and lead to decisions and systems that people trust and support. It also helps build understanding between communities, governments, and industry—creating a shared foundation for stronger, more sustainable health systems.

One example from the whitepaper is South Korea’s Patient Basic Act, which creates a legal basis for including patients and caregivers in health-policy processes—for example, through mandated representation and formal consultation. Another is Kidney Health Australia’s (KHA) End Dialysis by 2050 initiative, where patient stories combined with survey data helped build support for new programs, early detection and broader public investment.

As Vanessa explains, “When patients shape decisions from the outset, healthcare innovation reaches further and delivers more.”

Looking ahead

We presented the whitepaper at a side event to the UN High-Level Meeting on Non-communicable Diseases and Mental Health in September 2025. The consensus: Positive health outcomes follow when patient perspectives are truly embedded—not just acknowledged—in policymaking.

Vanessa summarizes: “Innovation is only truly innovation if it serves the people it’s meant to serve. Patient input enriches our understanding of needs, and a system-wide approach ensures solutions reach them in ways that fit the context of their condition and social determinants of care. This is patient-powered progress. It transforms lived experience insight into action, innovation into impact and progress into better outcomes for all.”

Shaping connections

We connect lived experiences with science. Our teams translate Patient Experience Data into trial measures, design choices and advocacy tools. By bringing regulators, clinicians and communities to one table, we turn insight into action—systems people trust because their voices shaped what we build together.