Putting patients first: unlocking the power of lived experience through Patient Experience Mapping

Over the past two months, we’ve had the privilege of engaging with the healthcare communications and patient engagement communities at MAPS EMEA, ISMPP Annual, ISPOR US and Patients as Partners Europe. Across continents and conversations, one theme clearly stood out: patient involvement is no longer optional – it is essential.

We heard an urgent call for approaches that do not just include patient voices but embed them deeply and meaningfully into healthcare decision-making throughout the drug development lifecycle. And yet, despite broad agreement on its importance, many still struggle to systematically and credibly integrate the lived experiences of patients into strategies, research and communications that truly bring patient voices to the forefront of healthcare decision-making.

At Oxford PharmaGenesis, we believe that challenge has a solution: Patient Experience Mapping.

Moving beyond intention to impact

Today, effective healthcare must be informed not only by clinical evidence but also by real-world insight into what patients live through – medically, emotionally, socially and financially. Regulatory agencies and health technology assessment/payer decision-makers are increasingly demanding these data to support reimbursement and access, and patients are calling for it. These insights are equally critical for shaping internal strategies, including medical and brand plans, ensuring they are aligned with patient needs and expectations. But the reality is that much of these insights either go uncollected, remain siloed or lack the scientific rigour to drive real change.

That’s why we’ve developed a robust methodology for developing and publishing a Patient Experience Map (PEM) – a consolidated and holistic view of the patient journey and experience that transforms fragmented anecdotes to structured actionable evidence.

What is a Patient Experience Map?

A PEM is a comprehensive representation of a patient’s journey through the healthcare system. Built from hybrid evidence generation activities, including qualitative insights and quantitative data – and co-created and validated with patients and caregivers – PEMs identify unmet needs, barriers to care and opportunities for innovation. All grounded in scientifically rigorous methodologies.

Our approach ensures that the final PEM is not just a descriptive document, but a strategic asset. One that is:

• engaging – capturing the voice of the patient in a way that resonates across stakeholders
• rigorous – underpinned by validated, methodologically sound processes
• credible – supported by peer-reviewed, publishable outputs
• consistent – built for long-term impact across the lifecycle of a medicine.

From insights to action

A well-developed PEM doesn’t sit on a shelf. It informs R&D strategy, guides regulatory submissions, facilitates reimbursement and access decisions, shapes business planning and supports cross-functional decision-making. Just as critically, it becomes a vehicle to build meaningful relationships with patients, caregivers and communities – reinforcing trust and fostering true collaboration.

Why partner with Oxford PharmaGenesis?

We are uniquely positioned to deliver PEMs that make a difference.

• We foster authentic collaboration between patients, healthcare professionals and industry.
• We navigate regulatory and compliance complexities with confidence and clarity.
• We have a proven track record in publishing hybrid evidence, co-authored with patients and caregivers.
• And we support clients not just in developing PEMs, but in leveraging them strategically throughout the organization.

Our work on a rare disease PEM has been published  in a peer reviewed journal and another PEM on a chronic condition has been recognized with the People’s Choice Award for Best Abstract at a leading congress.

The time for Patient Experience Mapping is now

As we reflect on what we’ve learned from our peers and partners at MAPS EMEA, ISMPP Annual, ISPOR US and Patients as Partners Europe, the message is clear: patient experience isn’t a box to be checked – it’s a foundation for better science, smarter strategies and more human healthcare.

Let’s move beyond conversation and into transformation.

Let’s bring patient voices to the forefront of healthcare.

To learn more about Patient Experience Mapping and how it can drive value across your organization, get in touch with Oxford PharmaGenesis.

Together, we can turn lived experiences into lasting impact.