Sustainability in healthcare — a call to action from ISPEP for professionalised patient engagement practices

Healthcare systems around the world are under increasing pressure—rising demand, constrained resources, and widening health inequities. At the same time, expectations are higher than ever: better outcomes, faster innovation, and broader access to care.

Meeting this moment requires more than incremental change. It requires partnership. And at the centre of that partnership must be the patient.

If we are serious about building a more resilient, sustainable healthcare system, we need to fundamentally rethink how we engage patients in drug development—not as participants, but as partners.

First, we must move from patient input to patient co-creation.

Too often, patient engagement happens too late—after protocols are written, after endpoints are defined. But patients bring a perspective no dataset can replicate: the lived experience of disease, the realities of navigating care, and the outcomes that truly matter in daily life.

By involving patients early—alongside health systems and clinical partners—we can design trials that are more relevant, more inclusive, and ultimately more successful. This is not just good ethics; it is good science.

Second, we must align patient engagement with the realities facing health systems.

Healthcare providers are managing workforce shortages, capacity constraints, and increasing complexity. If we design therapies and trials in isolation, we risk adding to that burden rather than alleviating it.

But when we collaborate—with patients and providers together—we can develop solutions that fit into real-world care. Treatments that reduce hospital visits. Trials that integrate into routine practice. Innovations that improve outcomes while easing system pressure.

Third, we must elevate the patient voice through real-world evidence.

Clinical trials are only part of the story. To truly understand impact, we need to capture how therapies perform in the real world, across diverse populations and care settings.

This means embedding patient-reported outcomes as core measures of success. It means leveraging digital tools to better understand the day-to-day experience of patients. And it means partnering across the ecosystem—pharma, providers, and payers—to generate evidence that reflects reality, not just controlled environments.

Fourth, we must design for access from the very beginning.

Access is too often treated as a downstream challenge—something to address after approval. But if we are serious about equity, access must be built into development itself.

That means designing trials that reflect real populations. Reaching underserved communities early. Removing logistical and structural barriers to participation. And working with trusted local partners to build engagement and trust.

Because a therapy cannot deliver value if it does not reach the people who need it.

Fifth, we must create shared value across the healthcare ecosystem.

No single stakeholder can solve these challenges alone. Sustainable progress depends on aligning incentives—around outcomes that matter to patients.

This opens the door to new models: collaborative funding approaches, value-based agreements, and shared investment in patient engagement infrastructure. When we measure success through the lens of patient outcomes, we create a common language across pharma, providers, and payers.

And finally, we must build trust—and earn it continuously.

Trust is the foundation of every successful partnership. It is built through transparency, through listening, and through demonstrating that patient input leads to real change.

It means closing the feedback loop—showing patients how their contributions shape decisions. It means being present in communities, not just in moments of need, but over the long term.

Because engagement is not a transaction. It is a relationship.

So where do we go from here?

If we are serious about embedding patient engagement as a cornerstone of sustainable healthcare, then we must move beyond aspiration—and into action.

First, we must make patient engagement a mandatory, professionalised practice.

Not optional. Not inconsistent. But embedded into governance, development frameworks, and regulatory expectations across healthcare systems. This means defining clear standards, competencies, and accountability for how engagement is designed, delivered, and measured.

Second, we must invest in the capability of the workforce.

Patient engagement requires skill—facilitation, ethics, co-creation, and data integration. We need to equip professionals across pharma, health systems, and research with the training and tools to do this well, consistently, and at scale.

Third, we must adopt shared frameworks and standards that enable collaboration.

Without a common language and approach, engagement remains fragmented. By aligning on best practices and evidence-based methodologies, we can scale what works and demonstrate impact across the system.

This is where organisations like International Society for Patient Engagement Professionals play a critical role.

ISPEP is helping to define what “good” looks like in patient engagement—through professional standards, competency frameworks, and a global community of practice. It supports professionals with the training, resources, and accreditation needed to embed high-quality engagement into everyday work.

In doing so, it is not only elevating the discipline—it is enabling healthcare systems and their partners to deliver more consistent, credible, and impactful patient engagement.

In closing, the future of healthcare will not be built by any one organisation or sector. It will be co-created—across health systems, technology partners, communities, and, most importantly, with patients themselves.

If we commit to truly patient-centred drug development—grounded in partnership, powered by real-world insight, and focused on equitable access—we can deliver not only better therapies, but a more resilient and sustainable healthcare system.

That is the future we have the opportunity to build together.

ISPEPers — we would love you to comment ahead of our Reuters Pharma session on Friday. Let us know your thoughts below!