AI Patient Crew workshop
The “AI Patient Crew Pilot: 2 days with patients for co-design” workshop, supported by the DataTools4Heart consortium, has successfully concluded. This initiative brought together twelve heart failure patients from England, Germany, Belgium, Spain, the Netherlands, Ireland and Poland.
The idea for the AI Patient Crew first emerged during the European Society of Cardiology (ESC) Cardiovascular Round Table on AI in March 2025, where participants were invited to develop concrete project ideas. ESC Patient Forum members Axel Verstrael and Richard Stephens proposed the creation of the AI Patient Crew to give patients a voice in shaping AI tools for healthcare. Recognizing the potential impact of this initiative, Karim Lekadir, the DataTools4Heart project coordinator, offered to run a pilot, helping to translate the idea into a concrete program.
With AI playing an increasingly significant role in modern medicine, it is becoming clear that patients are seeking both guidance and a voice in the development of these tools.
As Axel Verstrael explained, “With this pilot project in cardiology (healthcare), we’re doing what’s common practice in other sectors: involving the customer in the development of new products from the very beginning. This is the first lesson for every startup, as it offers the greatest chance of success. I’m pleased that we’re participating in this initiative to close this gap.” This highlights a core principle of the AI Patient Crew: digital tools should be co-designed, not only by doctors and engineers, but with patients as equal partners.
Involving patients from across Europe in the pilot proved to be a significant advantage. Their diverse experiences of different health systems as patients with heart failure bring unique perspectives, helping to design AI tools that are more relevant, inclusive, and responsive to the real needs of patients. This diversity also contributes to a truly patient-centered approach, identifying opportunities for tools that are practical, inclusive, and aligned with real-world healthcare situations.
Once recruitment was completed, participants started on a multi-step learning journey. It began with an independent e-learning session based on selected chapters from the “Elements of AI” course, introducing key concepts and real-world applications. This four-hour, self-paced activity helped build a common foundation of AI knowledge before the workshop phase.
The next step was a two-hour webinar, led by Marina Camacho, Machteld Boonstra and Karim Lekadir, introducing participants to the basics of AI in healthcare and the role of patients. The following Q&A session was rich and dynamic, revealing a wide range of perspectives and levels of understanding among participants. These exchanges once again highlighted the importance of open dialogue and collaboration between the different stakeholders involved in shaping the future of AI in healthcare. As Karim Lekadir shared, “It’s good to hear how patients feel about AI. It reminds us that innovation should always start with people’s needs and lived experiences. By listening to patients, we can design AI tools that not only advance science but are also easy for them to understand and use in their daily lives.”
The journey reached its next phase with an in-person workshop in Barcelona on 1–2 October 2025, allowing participants to collaborate directly with researchers and developers to ensure patient-centered design of AI tools. The workshop was coordinated by Fleur Meijers, who oversaw all logistics and served as the primary point of contact for the patients, ensuring a smooth and welcoming experience for all participants. The sessions were structured around the FUTURE-AI principles: Usability, Universality, Explainability, Fairness, Robustness, Trust, and Traceability guiding participants through discussions about patient needs, tool relevance in care, and safety considerations.
With interactive sessions focused on the general patient’s needs, the importance of potential tools in a patient’s care and the safety and reliability of such tools, this meeting tried to go through all the different steps of an AI tool development and to meet the different topics and wishes raised.
As one of the patients explained: “When I heard about AI in medicine, I thought it was something only experts could understand. Thanks to this experience I learned that my perspective as a patient matters, and that AI can make care more personal when we’re included in its design.”
The goal of this pilot initiative was to ensure that innovation in healthcare remains human-centered, needs-driven and useful. The rich and wide-ranging viewpoints, discussions and exchanges will now be analysed to help the DT4H consortium shaping a tool developed more closely reflects patient needs and expectations
Reflecting on the sessions, Laura Arbelaez Ossa, one of the moderators, noted, “AI shouldn’t simply be implemented for patients, it should be shaped with them. What made these sessions really valuable was being able to interact directly with patients and hear what they have to say. It quickly became clear that they have a lot of insights about these tools, but often they don’t get the space to share them. By giving them that space, and letting them hear each other’s perspectives too, we learned so much about what really matters to patients.”
The AI Patient CrewPilot workshop demonstrated how constructive and purposeful dialogue between patients and researchers can shape the future of healthcare. It reinforced the importance of keeping AI innovation human-centered and grounded in real patient experiences, ensuring that new tools truly reflect and respond to people’s needs. The insights collected will help the project consortium align their future developments with what truly matters to patients.
“I hope we can repeat similar exercises and activities with other patients and other groups of developers and researchers,” concluded the creator of Patient AI Crew, Richard Stephens. “It would be good to have patient involvement in AI projects as a matter of routine for all concerned. Then health science, data technology, clinical care and patient experiences can all move forward together.”