Reflections by Lenka Součková: Bridging Research and Patient Involvement

Lenka Součková is a EUPATI Fellow, EUPATI National Platform (ENP) Cluster Leader, and a Clinical Researcher at CZECRIN. With deep expertise in regulatory and ethical requirements, as well as the methodology of clinical studies, Lenka also actively contributes to the academic community through her lectures and conferences at the Faculty of Medicine, Masaryk University.

We invited Lenka to share her reflections on patient involvement from an academic researcher’s perspective, her views on real-world evidence, and her thoughts on Patient and Public Involvement (PPI) in research.

As EUPATI’s governance structure includes five clusters — ENP, Fellow, Patient Organisations, Academia & NGO, and Industry — we also asked Lenka to reflect on how cluster collaboration supports multistakeholder engagement and strengthens the broader EUPATI community.

Let’s hear Lenka’s insightful reflections in her words.

Changes I have observed in patient involvement from a perspective as academic researcher.

Over the past decade, we have witnessed an important transformation in how patient involvement is understood and practiced. In the early days, patient input was often tokenistic — patients were “at the table” but not always meaningfully heard. Today, thanks in large part to EUPATI, there is a shift toward structured, competency-based engagement.

As an academic, I have seen this change first-hand:

• Researchers increasingly recognise that involving patients improves study design, recruitment, and dissemination.
• However, many still lack practical tools, dedicated training, and institutional incentives to implement involvement consistently. Training for researchers, investigators, and physicians is particularly missing — especially training on how to engage patient experts effectively and to change the mindset that patients are not merely advice receivers, but equal partners who can co-create and even help redirect research in more meaningful directions.

From the perspective of the Czech EUPATI National Platform, I can confirm there is strong momentum, but also challenges which include:

• Patient involvement is gaining visibility, yet sustainable frameworks at the national level remain fragile.
• We are working to show the added value to decision-makers, while also building trust between patient organisations and academic researchers.

Importantly, we can take inspiration from some EU countries, e.g. Sweden, where formal, full-time job positions for patient and public involvement have already been established at universities as members of boards and committees. This ensures that patient input is not symbolic, but embedded in research planning and execution — preventing projects from being carried out solely as academic exercises, and instead ensuring they are meaningful and impactful for patients.

Patient involvement is no longer optional; it is a quality criterion for good research. The next step is to provide researchers and institutions with training, incentives, and structures that make involvement a natural and systematic part of the process.

Let me do a short reflection on Real-World Evidence (RWE) and Patient and Public Involvement (PPI)

The keynote on Real-World Data (RWD) and Real-World Evidence (RWE) resonates strongly with me. RWE is becoming indispensable for regulatory decisions, health technology assessment, and even for reimbursement but as well for clinical decision. But involving patients in this domain raises new challenges and opportunities:

One practical barrier we need to acknowledge is that patient representatives and advocates usually do not have direct access to the very data or scientific outputs they are expected to comment on. Real-World Evidence relies on interpretation of published studies, registries, and databases — but many expert journals are behind paywalls or accessible only through institutional affiliations. Some medical papers are even restricted to those with a healthcare background. This creates a paradox: we ask patients to co-create evidence, yet we do not give them the tools to access it. If we want meaningful involvement in RWD and RWE, we must address not only data generation but also data accessibility for patient experts.

Here, EUPATI can play a role in bridging knowledge gaps — not only by training patients, but also by educating professionals on how to effectively integrate patient perspectives into these rapidly evolving research areas.

Key message: RWD and emerging methodologies will only be credible and relevant if patients are meaningfully involved in shaping them.

Reflections on cluster collaboration and multi-stakeholder engagement

EUPATI’s governance structure has evolved in recent years, and I see great value in having Fellows, ENPs, Patients Organisations, Academia/NGOs, Industry, and diverse partners actively contributing. This ensures that decisions are transparent, inclusive, and credible — qualities essential to maintain trust, especially as EUPATI expands its partnerships and portfolio.

The cluster collaboration is a unique opportunity. National Platforms can serve as neutral spaces where patients, academia, regulators, and industry come together at the National level. For example, in the Czech Republic, the ENP has already enabled constructive dialogue across these groups — and this could be replicated elsewhere – local EFPIA, patient organisations, EUPATI Fellows but regulatory body as well.

Looking ahead, I believe we must go beyond dialogue and move toward practical co-creation. One idea could be to establish “co-creation labs” where multi-stakeholder groups work together on concrete challenges: designing patient-friendly consent forms, shaping registry outcomes, or piloting joint RWE studies.

Patient involvement has progressed enormously, but the next step is to make it systematic and sustainable. Collaboration — within EUPATI and across clusters — must continue to evolve toward co-creation, not only consultation.