Moving from patient centricity to patient partnership

‘Patient centricity’ has become one of the common buzzwords in the life sciences industry, and at the Patient Centricity & Collaboration World Congress (PCCWC) 2026 Europe, held in London this past February, it was clear that nearly every organisation is positioning itself as patient centric.

At the same time, patients are shifting from being passive research participants to active co-creators, but many are unsatisfied with the pace of change. Patient advocacy groups (PAGs) and people with lived experience are no longer satisfied with being consulted. They want influence.

In a recent interview with the DGA Group, Danielle Drachmann, senior patient partnering manager at Thermo Fisher Scientific and CEO of Ketotic Hypoglycemia International, summed it up like this:

“Patients are no longer asking for a seat – we are building the table.”

This desire for patients to be active partners in research challenges how organisations approach patient engagement. Organisations need to move from one-off, project-based efforts to structural changes in how research is conducted. They also need to rethink how to they measure the value of patient engagement, how they make decisions, and which stakeholders should be included.

Co-creation is becoming the new standard

The PCCWC highlighted that patients are no longer being asked for their reactions to other people’s ideas. Increasingly, patients are helping shape research agendas, inform protocol design, and define endpoints. Lived experience is now being recognised as a critical form of expertise.

In her interview with the DGA Group, Drachmann explained:

“When different forms of expertise are treated as complementary, rather than hierarchical, research moves faster and becomes more relevant.”

For the life science industry, this requires a change in mindset. They need to start bringing in patients before decisions are made, rather than after.

During the PCCWC, a particularly important moment was pointed out: the window between setting research priorities and designing specific studies. This is when meaningful engagement can happen, allowing companies to better understand lived experience before key decisions are locked in.

When used well, patient engagement can help guide research to deliver results that patients want and need. This is not just about being nice to patients, but about building meaningful and successful research.

Some organisations are taking this model beyond trial decisions. During the PCCWC, one pharmaceutical company explained that they co-created their mission with patient communities and shaped their company culture around the insights obtained from ongoing patient engagements. By embedding patient perspectives throughout the development lifecycle and the wider organisation, they constructed their approach around the patient journey, starting with real-world needs, rather than a business case.

Organisations should be embedding co-creation in how they operate. To have a sustained and lasting impact, patient engagement needs to be built into governance, decision-making, and company culture.

Extending the mindset beyond ROI

Another main insight from the PCCWC was that (often short-term) return on investment (ROI) is not sufficient for evaluating the full impact of patient engagement. ROI is transactional, while patient engagement is relational.

During the congress, and as described in , Drachmann coined the concept “return on engagement” (ROE) as a way of capturing this longer-term impact of patient engagement and its ability to support sustained ROI.

Specifically, ROE captures the impact of patient insight on:

Protocol design
Risk identification
Recruitment and retention
Trust from patient communities

When considered from this perspective, patient engagement is essential for improving the quality of decision-making during product development. Organisations that continue to rely solely on ROI risk undervaluing and under-reporting one of their most powerful strategic assets – people with lived experience.

Trial design: Where patient engagement can deliver immediate value

ROE implies rethinking how patient engagement is incorporated into research and product development. However, a complete overhaul of company infrastructure is not realistic for most organisations. System-level changes take time, require broad internal alignment, and often depend on clear metrics to demonstrate impact before investment is made.

Clinical trial design is one place where patient engagement can deliver immediate value. Some well-known challenges include:

Patients may choose not to enrol due to fear of receiving placebo, or they may leave trials early to access treatment elsewhere. In both cases, trial integrity is compromised. From a business perspective, these are not just patient issues, they are serious risks.

This is where ROE becomes tangible. Early patient input can help:

Identify feasibility issues before trials begin
Reduce the likelihood of costly amendments
Improve participant experience and retention

Moving from concept to implementation

Patient centricity has achieved widespread adoption. Now is the time for structural implementation. ROE provides a framework to guide this transition by shifting the focus from short-term ROI to long-term, sustainable value. Successful organisations will be those that integrate lived experience in their research and infrastructure.

About the authors

Maddie Yorke, BSc, is advocacy services senior manager at the PPD clinical research business of Thermo Fisher Scientific, where she leads global patient advocacy engagement across clinical research programmes. With nearly a decade of experience building trusted partnerships with Patient Advocacy Groups, she focuses on ensuring patient insights meaningfully inform feasibility, recruitment strategies, and the overall study experience. She also supports advocacy organisations in developing and growing online patient communities. Previously, Yorke held multiple roles at HealthUnlocked, PPD’s online communities platform for peer-to-peer patient support, including head of community partnerships and product lead. In these roles, she helped shape digital tools grounded in lived patient experience, supporting a safe and engaging platform for more than 2 million patients and caregivers.

Danielle Drachmann, MSc, is an award-winning rare disease advocate and global patient engagement leader. She is a senior patient partnering manager at the PPD clinical research business of Thermo Fisher Scientific, where she supports all of the company’s patient partnering activities. She is also the founder and CEO of Ketotic Hypoglycemia International, focused on helping families impacted by idiopathic ketotic hypoglycaemia, driving research with families from the patient community. Recipient of the 2022 Young Patient Advocate Award at the EURORDIS Black Pearl Awards, she also serves on the Advisory Board of the International Society for Patient Engagement Professionals (ISPEP), supporting the global advancement and professionalisation of patient engagement.

Phil Leventhal, PhD, is a senior manager at the PPD clinical research business of Thermo Fisher Scientific, where he leads the Publications and Scientific Communications team. With more than 20 years of experience in medical writing and scientific communications, he combines deep practical expertise with strategic planning to deliver effective communication solutions. Leventhal is a strong advocate for writing for the reader and for using storytelling in scientific communication to make complex science clear, relevant, and meaningful. He is passionate about patient authorship and engagement and, since 2024, has collaborated with Danielle Drachman on multiple initiatives to advance patient involvement in research and publications.