At this year’s Lundbeck #1VoiceSummit in Copenhagen, GAMIAN-Europe brought the voice of lived experience to the centre of discussions on digital mental health. The event, which gathered patient advocates, healthcare leaders, and innovators from across Europe and beyond, focused on shaping the future of brain health through collaboration, empathy, and digital transformation.
Our President, Péter Kéri, addressed the audience as a patient leader, reflecting on how far the mental health movement has come and the work still needed to ensure it includes every voice. In a powerful intervention, he spoke about the right of people with lived experience not just to use digital mental health tools, but to shape how they are created and implemented.
“We have the right to be in it — not just as users, but as roots, co-creators, and witnesses of how digital mental health tools are born.”
He urged those present not to sanitise the patient’s voice by only amplifying what is palatable or polished. True progress, he argued, means recognising the realities of structural harm, stigma, and trauma, even when they are uncomfortable. These stories hold truths that polished narratives often miss.
“Trauma isn’t always about losing a pet. Sometimes, it’s about surviving deep, invisible wounds — and those experiences can shape the most profound innovations if we dare to listen.”
Péter also spoke about the anxiety many feel in the face of AI and digitalisation, especially when systems become too opaque to understand. Ironically, he noted, some healthcare professionals seem more apprehensive about AI than patients themselves. People with lived experience are already experimenting with digital tools to aid recovery, self-expression, and connection. But the systems behind these tools must be built on equity, transparency, and inclusion, or they risk replicating the very gaps they seek to address.
In parallel, Nigel Olisa, Executive Director of GAMIAN-Europe, highlighted the importance of building bridges, not only between sectors, but also between imagination and reality. Reflecting on a compelling fireside chat between Lundbeck CEO Charl van Zyl and youth advocate Alexander Tobias Ysbæk-Nielsen, Nigel emphasised that brain health innovation is not just about the next algorithm or app, but about human dignity, emotion, and experience.
“AI is already helping improve support and outcomes—from smarter patient engagement to personalised care,” Nigel noted. “But we also spoke honestly about the challenges: How do we ensure digitalisation protects the dignity and privacy of those it aims to serve?”
Both leaders stressed the non-negotiable role of patients in digital health innovation. Whether designing digital biomarkers, using AI for personalised treatment, or building new apps and platforms, people with lived experience must be involved from the outset, not as an afterthought, but as partners. A key takeaway was the critical need to ensure that digitalisation does not compromise dignity, privacy, or autonomy. Both Nigel and Péter stressed that data must not become nationalised in ways that prevent healing, especially when mental health and emotional recovery often transcend borders and cultural boundaries. When narratives are restricted, so too is the freedom to fully understand ourselves and recover.
The Summit also featured early reflections on the power of imagination to influence digital futures. This theme resonated deeply in Péter’s exchange with digital health designer Bianca de Teffé Erb. Together, they explored how sci-fi storytelling and lived experience can converge to inform the development of ethical and accessible digital tools for tomorrow.
As GAMIAN-Europe continues its work across digital mental health, policy, and research, events like OneVoice reaffirm our belief that real change happens when those with lived experience are not just invited, but expected, to lead.
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