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From 'Big Pharma' to Non-Profit: Lessons for Transformation from ISPEP's CEO




Introduction


As an R&D and business executive, I’ve spent more than two decades transforming clinical trials and healthcare in general. Drug development provides the future of medicine and patient health but the process of how we design and deliver clinical trials has been driven more by operational convenience than by patient reality to date. 


Today, that’s no longer acceptable. Regulatory expectations, public trust, and scientific outcomes now depend on how well we understand and act on patient needs and preferences. 


I’ve seen first-hand that transforming the culture of research isn’t just about building empathy or alleviating tokenism, it’s about professionalising patient engagement and embedding it as a measurable, accountable discipline at the core of medicines development. 


The early days of driving change


My journey began in the world of chemistry, working on the compounds that could one day become medicines. It was interesting, but it felt removed from my ‘guiding compass’. When I moved into global study management at Roche, that disconnect between development and real patient experience became impossible to ignore. We were designing protocols, running studies, and chasing performance milestones, but behind every datapoint on a spreadsheet, was a patient – with hope, fear and the daily burden of their condition.


That awareness drove me to challenge the status quo long before ‘patient engagement’ was formalised as a discipline. There we formed one of the earliest initiatives designed to put patients at the centre of research, the Trial to Patient (T2P) innovation group. 


We were a small team, often seen as disruptors, challenging decades of processes and ways of working, to redesign studies from a patient-first perspective. We redesigned everything from paediatric sampling policies and drug formulations, to how protocol feasibility was tested and communicated. We embedded patient input (insights we viewed as data) directly into protocol design when it wasn’t the norm, used early social listening to surface real unmet needs, and demonstrated how these changes improved enrolment and reduced burden of participation. It was the early days of patient engagement in R&D, only now gaining traction as we witness new operational and organisational frameworks being embedded as standard.


This work taught me many requirements for transformation that still define how I lead today – structure, evidence, investment, change management, persistence – as well as that systems must adapt to people, not the other way around. 


Becoming a change agent: lessons learned along the way


While working in ‘Big Pharma’ organisations such as Roche and AstraZeneca, I learned the power of influence from within. Large organisations don’t change overnight; they evolve because persistent people create frameworks, strong stakeholder alliances and governance systems to make new ways of working sustainable. I learned to use data as evidence in business, not just science. It was through process and cultural transformation, from investment into structural change management. 


I also learned the value of integration and scalability. True transformation happens when we move from pilots into core delivery models, and from nice ideas into strategic levers for R&D performance and regulatory readiness.


At IQVIA and through consulting in general, I gained perspective beyond the silo of a single sponsor. Moving into the CRO environment revealed the full breadth of industry practices, risk tolerance, and operational models across hundreds of global programmes. It was here I learned the art of what’s possible – how to apply patient engagement in R&D not as an isolated initiative, but as an operational discipline spanning opportunities in trial feasibility, recruitment, site enablement, and digital. 


Through these experiences, I also fine-tuned my understanding of efficiency, financial accountability, and value creation, to not only improve patient experience but demonstrably ensure effectiveness, work smarter, and shorten timelines. Data, analytics, and digital innovation became central tools in this, enabling smarter targeting through machine learning, RWD/E, and real-time oversight in tandem with classical patient engagement tactics. This reinforced my belief that systematic, data-driven engagement is essential if we want to prove ROI and move beyond tokenism.


From agency engagement and consumer health start-ups, I learned the role of communication and impact of behavioural science in humanising healthcare, as well as the value of consumer principles and customer experience – a key component of redefining Cx = Px (customer experience = patient experience). Even the most innovative models fail if stakeholders don’t understand the “why”.


The irony is that for many years, I discussed the challenge of patient involvement through the analogy of consumer brands; that manufacturers of fizzy drinks spend more time learning what their consumers like, want and prefer than we do in pharma and medicines development. For those that are always asking how to pronounce ISPEP – it’s PEPSI spelled backwards…


Bringing it all together through ISPEP


Overall, my journey across industry, agencies, and startups, and now the rigour and responsibility of a not-for-profit, taught me that sustainable change depends on alignment, trust, and courage for change. 


That’s exactly what ISPEP was built to deliver: a unifying and inclusive society that together transforms patient engagement through:


  • Its vision and mission.

  • Its members bringing individual and community passion and professionalism.

  • The power of business excellence, good governance, and exceptional partnership.


On International Patient Engagement Day 2025, my message is simple: we must continue to demonstrate the strategic necessity and business value of the patient engagement profession. Together, we are redefining patient-centred science. It’s time to treat it as a core business function that drives quality, compliance, and performance across the lifecycle of drug development – ne’er a truer word spoken by any CEO!


Alex Charge

CEO, ISPEP







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