VML Health Patient Advocacy Summit

VML Health recently convened its inaugural Patient Advocacy Summit in Berlin, bringing together a diverse and dynamic group of patient advocacy leaders, clinicians, and industry partners. Hosted alongside ESMO, the summit posed a fundamental question: how can connection create impact in healthcare? The answer, echoed throughout the powerful discussions, was clear: by moving beyond abstract notions of "the patient voice" to truly integrate lived experience into the heart of strategy, policy, and care.

As Nichole Davies, VML Health’s Global Chief Strategy Officer, articulated in her opening remarks, "When we connect voices, we find clarity. When we connect knowledge, we drive action. And when we connect strategy, we drive lasting change." This ethos underpinned every session, reframing advocacy not as an optional add-on, but as the essential force propelling healthcare forward.

Empowering Patients Through Health Literacy: A Shared Responsibility

The summit began with a compelling call to action from Dr. Urška Košir, a behavioural scientist and patient advocate. Dr. Košir highlighted health literacy as a critical, yet often overlooked, barrier in healthcare. Drawing on her work in adolescent and young adult oncology, she emphasized that health literacy is a shared responsibility, extending beyond patients to healthcare systems and professionals. With half of Europe’s adults struggling with health literacy, the consequences are poorer outcomes and increased costs.

Dr. Košir advocated for the co-creation of health materials with patients, citing examples like a New York hip-hop campaign for screening and Youth Cancer Europe’s peer visit program, which identified neglected priorities like mental health. She also explored the potential of AI to widen access, while cautioning that digital tools must be co-created with users to avoid deepening inequities. Her core message: small, persistent advocacy efforts around health literacy can spark significant systemic shifts towards more equitable, patient-centred care.

Health literacy isn’t a buzzword—it’s a game-changer. Better communication empowers patients and transforms systems.

Dr. Urška Košir

Research Manager, Swedish Institute for Health Economics

Breaking Barriers: Connecting for Equity

A vibrant panel discussion, facilitated by Nichole Davies, ignited further debate on health inequity. The conversation quickly moved beyond theoretical concepts, with delegates passionately sharing real-world problems and solutions. Key social determinants like loneliness, geography, and language were identified as significant barriers. Dr. Thomas Hofmarcher highlighted how linguistic barriers can erode trust and clarity during critical moments like a cancer diagnosis.

The panel also exposed the stark reality of data inequity, where missing ethnicity data and a lack of comprehensive databases for conditions like metastatic breast cancer blind policymakers to disparities, hindering effective diagnosis and treatment access. Dr. Košir championed innovative approaches like peer-led data collection to uncover unmet needs, urging creative solutions to academic resistance to "non-validated" qualitative data.

A recurring theme was the persistent issue of tokenism in patient participation, particularly in Health Technology Assessments (HTA), where genuine impact remains rare despite increasing involvement. The collective voice of advocates underscored that true inclusion, not just attendance, is paramount for driving equitable outcomes.

From Voices to Policy: Driving Action

The summit then delved into how lived experience can directly shape policy. Dr. Victoria Harmer shared powerful examples from her work, demonstrating how understanding a patient – their daily realities and challenges – leads to better adherence, greater trust, and smarter resource allocation. Her examples such as open mornings for people with learning disabilities to improve breast screening access and the "Black Women Rising" campaign tackling low screening rates, showcased how practical empathy and community-based outreach drive inclusion and policy change. Dr. Harmer’s "5-day rule" – act on ideas within five days – served as a powerful reminder that advocacy demands swift, tangible action.

Lived experience drives trust, innovation, and smarter care. Advocacy must move beyond awareness to action.

Dr. Victoria Harmer

Consultant Breast Nurse, Imperial College Healthcare NHS Trust, UK

Dr. Tanja Španić, a breast cancer survivor and advocate, reinforced the message that "advocacy is what you do, not the seat you occupy." Drawing on her work with Europa Donna, she stressed the importance of trained, confident advocates being involved at every stage of policy, research, and care design. She urged meeting patients early with accessible communication and building capacity through training, emphasizing that knowledge multiplies impact.

The Cancer Currency: Creative Advocacy in Action

Sarah-Jane Barker of VML Health presented a compelling case study illustrating how creativity and advocacy can collide to move policy. The "Cancer Currency" campaign, a collaboration between Europa Donna and VML Health, tackled the invisibility of metastatic breast cancer (MBC) patients. Through listening sessions, it became clear that MBC patients felt ignored by the "sea of pink" during Breast Cancer Awareness Month.

The campaign created "The Most Valuable Currency in the World," featuring real women with metastatic disease on banknotes, detailing their lives. The campaign's moment of truth came when these women presented their banknotes to European Health Commissioner Stella Kyriakides, who subsequently announced new metastatic cancer funding within Europe’s Beating Cancer Plan. This initiative, achieving five million organic social impressions with no media budget, powerfully demonstrated that lived experience, built into creative storytelling, can directly influence policy and drive systemic change.

Representation drives reform. When lived experience leads, policy listens—and lives change.

Sarah-Jane Barker

SVP, Global Medical Consulting Lead, VML Health

Connected Strategies: Turning Ambition into Impact

The summit concluded with a practical toolkit for Patient Advocacy Groups (PAGs) to translate ambition into measurable impact. Sarah-Jane Barker and Alexandra Lewis of VML Health outlined the importance of strategic planning, emphasizing a SWOT assessment, clear, measurable goals, and an activity plan built with metrics in mind. Their "3Ps framework" – Purpose, Priorities, People – guides focused, collaborative efforts, stressing the need for co-creation with members and partners.

On partnering with pharma, they highlighted the value of aligning on shared values rather than transactional relationships. Pharma brings funding and reach, while advocates bring authenticity and insight, combining to create patient-centred work. With evolving advocacy roles and tightening budgets, PAGs are increasingly acting as conveners, collaborating with multiple pharma partners to build independence and influence. The message was clear: strategy builds credibility, purpose guides focus, and agility sustains momentum.

A Future of Connected Change

The inaugural VML Health Patient Advocacy Summit powerfully affirmed the transformative potential of connected with PAGs. It moved beyond rhetoric to demonstrate how genuine patient inclusion, strategic collaboration, and authentic partnerships can drive fairer outcomes and build a truly patient-centred healthcare future. By connecting diverse voices, knowledge, and strategies, and by embracing these shared principles.

The summit concluded with a shared understanding that strategic collaboration and authentic partnerships – aligning on shared values between advocates and industry – are vital for amplifying messages and achieving systemic reform.

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