How Boston Scientific Foundation Europe’s support of digital initiatives is powering patient advocacy
Across Europe, patient organisations are finding new ways to be heard, not by speaking louder, but by working smarter. Boston Scientific Foundation Europe (BSFE) is seeing how digital tools are helping patient advocacy groups turn lived experiences into practical resources, and how those tools can become powerful levers for awareness, connection, and influence.
Digital adoption as a catalyst for advocacy in healthcare
Digital tools are often used by non-profits to support patient education, but increasingly, these tools are also being used for something just as urgent: visibility. They’re helping organisations surface shared needs, generate collective insights, and advocate for change.
For patients, the greatest value emerges when these tools reflect what matters to them. Patient organisations can be key players in designing, managing, and sharing data, helping ensure digital health works for their communities, not just around them.1
From data collection to collective voice
The Italian association Tremori ETS took a novel approach to advocating for essential tremor, a common yet under-recognised neurological condition. Working with AI-powered technology and assisted navigation, with financial support from BSFE, the team launched a highly accessible digital survey that broke through the physical challenges many people with tremor face when using phones or laptops.
In just a few months, the tool gathered data from hundreds of respondents, surfacing patterns of delayed diagnosis and inadequate treatment leading to declining quality of life. The findings became the basis for a national awareness campaign, media outreach, and engagement with health authorities calling for improved care. The simple tool, albeit one created with an innovative approach to data collection, became a launchpad for systemic advocacy.2
Mapping connection, building community
Another example of the broader impact of a digital tool comes from Parkinson’s Europe, the umbrella organisation representing the Parkinson’s community across the continent. The BSFE grant supported the development of an interactive community map.
On World Parkinson’s Day alone, the tool helped connect more than 50 local advocacy groups across Europe, enabling peer-to-peer connection and collective mobilisation. When patients are no longer isolated, their voices carry further. This kind of digital infrastructure helps organisations move beyond support services and into advocacy.
Human-first, not tech-first
What makes these tools effective isn’t the technology alone. It’s the patient-first design behind them, co-created with the communities they serve, and embedded in campaigns that speak to real-world needs.
“When patients are involved from the start, digital tools are more likely to be credible and reflective of the community priorities, driving adoption and ultimate change,” says Elena Moya, BSFE board member, European Patients’ Forum board member and VP of the Spanish Association against Meningitis.
BSFE investing in impact for patient communities
BSFE doesn’t just fund digital innovation. It supports initiatives with the greatest potential for impact. That might mean expanding access to care, connecting communities across borders, or building capacity among care workers. In cases like these, it means giving advocacy initiatives staying power through thoughtful, accessible technology.
About Boston Scientific Foundation Europe
Boston Scientific Foundation Europe is a non-profit organisation that supports well-being through digital solutions. Addressing issues of public interest, the Foundation funds initiatives from European non-profit organisations that help prevent or manage diseases. Established in 2018, BSFE is headquartered in France and funded solely by Boston Scientific. For more information, visit www.bostonscientific.eu/foundation, LinkedIn, or Facebook.
References:
1. Popa V, Geissler J, Vermeulen R, et al. Delivering Digital Health Solutions that Patients Need: A Call to Action. Ther Innov Regul Sci. 2024 Mar;58(2):236-241.
2. Associazione Tremori ETS. https://tremoreessenziale.it/wp-content/uploads/2025/03/Report-survey.pdf
3. Parkinson’s Europe. https://parkinsonseurope.org/map/