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From Data to Impact: Strengthening Patient–Industry Collaboration Through Evidence-Based Advocacy


Over the past two decades, my career in patient advocacy – deeply rooted in my personal experience as a breast cancer survivor – has shown me how patient voices, when backed by evidence, can drive meaningful change. Today, as Head of Communications at the International Bureau for Epilepsy, I remain committed to championing patient-centred approaches that lead to better healthcare outcomes.



Introduction


“Quality data is fundamental to change; it not only informs strategy, but provides the evidence needed to support solutions, challenge assumptions, and drive policy.” — International Diabetes Federation (2023)

Cross-sector collaboration is essential to developing solutions that truly serve patients. Evidence-Based Advocacy (EBA) supports these partnerships by uniting robust data, lived experience, and strategic communication to influence drug development and policy, promote equity, and ultimately align regulatory decisions and healthcare with patient priorities. This article explores how EBA can strengthen collaboration between patients and industry stakeholders to deliver meaningful, patient-focused impact.



What is Evidence-Based Advocacy?


EBA is a structured approach to influencing healthcare change by grounding advocacy efforts in credible evidence. According to WECAN (WECAN Advocate, n.d.), it rests on three core principles:


  • Targeted Advocacy: Directing efforts toward specific stakeholders – such as policymakers, healthcare providers, and industry leaders – to drive change.

  • Robust Data Collection: Using quantitative and qualitative research to capture patient experiences and outcomes.

  • Effective Communication: Framing messages strategically so that evidence resonates with the intended audience and drives action.



Turning data into action and influencing decision-making


While lived experience gives advocacy its heart, data gives it weight – transforming personal stories from anecdotal to actionable. It strengthens credibility, supports cost-benefit analysis, and empowers advocates to challenge misinformation. As the International Diabetes Federation (2023) notes, quality data informs strategy, drives action, and forms the foundation for engaging regulators, payers, and policymakers.


“While lived experience gives advocacy its heart, data gives it weight.”

Integrated insights – combining clinical, real-world, and patient-reported data – enable more impactful advocacy. By leveraging this, patient organisations (POs) can identify care gaps and present evidence that informs better decisions (IQVIA, 2023c).


EBA is especially powerful in shaping legislative, regulatory, and clinical decisions/guidelines. Data-backed proposals enhance credibility and support alignment with patient needs. For instance, the European Medicines Agency (EMA) is incorporating patient experience data into their marketing authorisation process. A related Patient Engagement Action Plan focuses on improving guidance and transparency around how such data informs decisions (DIA Global Forum, 2023).


Data-driven advocacy also advances health equity. POs can highlight disparities in access and outcomes and advocate for targeted interventions; further, combining data with lived experience helps shape equitable healthcare policies (The American Journal of Managed Care, 2023). Knowledge brokering – translating evidence into action – helps ensure services align with patient needs (Lavis et al., 2015).



Overcoming barriers to evidence generation


Patient organisations are uniquely positioned to gather insights from their communities. However, many are small, community-based, and often founded by patients or carers. Limited resources can lead to reliance on personal narratives and gaps in robust evidence (Geissler and Joyner, 2020) (to address this, organisations can seek funding to conduct surveys and focus groups, collaborate with researchers, and analyse existing literature to identify knowledge gaps).


“Patient organisations are uniquely positioned to gather insights from their communities...[a] collaborative approach ensures that data generated through patient organisations can accelerate the development of first-in-class treatments while improving tailored care”

An example of how patient organisations can overcome these limitations is the Rare Epilepsy Network (REN) Registry*. This registry is a comprehensive database designed to gather and structure detailed information on individuals diagnosed with rare epilepsies. With data from over 1,459 patients across 40 distinct disorders, the REN Registry captures critical information – including comorbidities, developmental milestones, seizure history, and medication side effects – that is essential for understanding the natural history of these conditions. By offering high-quality, real-world data, the REN Registry not only supports scientific research and clinical studies but also aligns closely with the drug development needs of pharmaceutical companies. This collaborative approach ensures that data generated through patient organisations can accelerate the development of first-in-class treatments while improving tailored care for individuals living with rare epilepsies.


Publishing findings enhances credibility. One example of this approach is the Global Epilepsy Needs Survey (GENS), which was led by the International Bureau for Epilepsy (IBE), co-designed with individuals living with epilepsy, and supported by a multi-stakeholder expert group. Its findings, due for publication in Q2 2025, will inform scientific publications and policy advocacy, offering country-specific data to support both national and international efforts.



Maximising the impact of evidence


Evidence can support regulatory submissions, influence reimbursement decisions, and improve patient care. Generating this evidence is only part of the equation; actively ensuring it leads to real-world impact is equally important. POs can achieve this by:


  • Developing integrated evidence strategies (i.e., identifying and addressing evidence gaps) that align with stakeholder needs and organisational goals

  • Coordinating efforts across teams and partners

  • Tailoring how evidence is presented to resonate with a range of audiences – whether healthcare providers, payers, regulators, or patients.


Advocacy is further strengthened through collaboration with academic researchers or scientific advisory councils to interpret and communicate complex data effectively. Using varied communication channels – such as focus groups, peer-led forums, and social media – helps ensure evidence reaches and engages its intended audience.


Maintaining high standards for evidence quality, while being transparent about limitations, fosters credibility. Empowering patients to engage with real-world evidence (RWE) also promotes ownership and deeper involvement in the research process (National Health Council, 2019).



Building trust and transparency


As POs take on greater roles in data generation, regulatory engagement, and policy influence, trust and transparency are imperative. With trust comes greater ease in data sharing, forming strong partnerships, and delivering impact; thus, advocacy hinges on trust both within patient communities and among external stakeholders.


Trust is built through transparency, value delivery, and consistent engagement (IQVIA, 2023d). Maintaining credibility is particularly important; to achieve this, POs must manage financial and institutional ties openly. Clear conflict-of-interest policies and independent decision-making are crucial to sustaining public and stakeholder confidence (Ball and Sisti, 2022).



Building skills and partnerships for effective advocacy


To excel in EBA, patient organisations need core skills in interpreting and communicating data effectively. Programmes such as EUPATI’s Open Classroom and the WECAN Academy offer training on translating complex scientific data into actionable insights (further resources are linked at the end of this article).


“Programmes such as EUPATI’s Open Classroom and the WECAN Academy offer training on translating complex scientific data into actionable insights.”

Equally important is forging strategic partnerships. Collaborating with researchers and industry can not only grant access to critical data and expert insights but also support the development of well-structured advocacy plans. Organisations can also tap into mentorship initiatives like the Patient Advocacy Leadership Collective to enhance leadership and problem-solving skills. At the same time, co-creating solutions with patients – exemplified by initiatives like the Global Advocacy Alliance – helps ensure that initiatives remain rooted in real-world experiences, making healthcare both evidence-based and aligned with patient priorities. This integrated approach strengthens overall impact, bridging technical expertise and lived experience to drive meaningful, equitable change.



What’s next?


Throughout this article, we've seen how Evidence-Based Advocacy can catalyse meaningful collaboration between patient organisations, pharmaceutical companies, and other stakeholders. Leveraging robust data alongside lived experience is more than a technical exercise; it’s a powerful strategy for influencing healthcare decisions, advancing equity, and improving patient outcomes.


To realise this potential, we must move beyond principles and invest in the practical tools, skills, and partnerships that make EBA possible – building capacity, supporting data generation, and fostering trust through transparency and shared purpose. 


As someone committed to advancing this work, I welcome continued dialogue on how we can collaborate to drive evidence-informed change. In particular, I’d value your perspectives in the comments section on:


  • How stakeholders can better support patient-led data initiatives

  • Challenges and solutions for integrating patient-generated evidence in decision-making

  • Steps we can take together to amplify the impact of EBA


There is real potential to transform data into action. By working together, we can ensure patient voices are not only heard, but also drive meaningful, lasting change across the globe.


 

The International Bureau for Epilepsy is one of the first patient organisations to receive the ISPEP PO Bursary. This programme provides free ISPEP membership to POs, who then share their expertise through ]publishing articles and case studies to the ISPEP Hub. For more information on the ISPEP PO Bursary or to enquire about application, please contact the ISPEP team.


The International Society for Patient Engagement Professionals (ISPEP) unites patient advocates/organisations with industry professionals, solution providers and more to drive the continued professionalisation of patient engagement and support the development of new skills, relationships, and solutions.


*The REN Registry closed in 2018 but is accessible through the Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) portal. The platform includes not only REN data but also information on over 34 diseases that overlap with rare epilepsy, including Angelman Syndrome, CACNA1A, hnRNP, KIF1A, Kleefstra, LGS, Prader-Willi, Sturge-Weber, and Tuberous Sclerosis.





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