Making space for patient expertise
Another idea that stayed with Jessica was the role of patients in defining what trustworthy AI should look like.
During the training, participants explored seven European requirements for trustworthy AI: human agency and oversight, technical safety, privacy and data governance, transparency, fairness, societal well-being, and accountability.
For Jessica, an important question emerged: rather than simply adding patient partnership as another requirement, what would it look like for patients to help shape what each of these principles means in practice?
Patients and caregivers bring a form of expertise grounded in lived experience.
“When we talk about ‘health data,’ it can sound very technical and removed from everyday life,” Jessica explained. “But that data represents real people and families.”
That perspective does not replace technical, clinical, or research expertise. Instead, she believes it belongs alongside those forms of knowledge.
Learning across borders
As the only Canadian participant, Jessica also valued the opportunity to learn from international peers and reflect on different healthcare systems and approaches to health data in Europe.
While initiatives such as the European Health Data Space provided a perspective she would not necessarily have encountered at home, she was struck by how many of the underlying questions were shared across countries.
How do we share data while protecting people? How do we make information useful for research without losing trust? How do we connect patients with expertise? How do we ensure smaller or underrepresented populations are not left behind? And how can Canada ensure that innovation in rare disease research and care is equitable, responsible, and grounded in lived experience?
“Rare disease really does cross borders,” Jessica said. “When populations are this small, no single country has all of the patients, data, expertise or answers. There is so much value in learning from one another.”
Bringing the conversation back to Canada
Jessica hopes to bring what she learned back to the Canadian rare disease, patient-partner, and research communities she is part of. For her, that includes making conversations about AI, data governance, and ethics feel more accessible to patients and caregivers.
“I don’t consider myself an AI expert after two days of training, and I don’t think that’s the goal,” she said. “Patients and caregivers shouldn’t have to become technology experts before they feel qualified to participate.”
Instead, she hopes people can build enough knowledge and confidence to ask thoughtful questions, understand the issues, and bring their own lived experience into the conversation.
Her lasting takeaway is simple:
“We don’t have to be experts in AI to have a voice in how it is used in healthcare.”
As AI and data-driven technologies continue to evolve, Jessica believes there is tremendous potential for rare disease, alongside important questions about privacy, representation, bias, transparency, trust, and accountability.
For her, the path forward is about learning together, asking good questions, and ensuring lived experience remains part of the conversation as these systems are built. For CRDN, these are exactly the kinds of conversations that need to happen as Canada works toward a more connected rare disease ecosystem.
An opportunity to continue learning
CRDN encourages patient partners, caregivers, advocates, researchers, and community leaders interested in rare disease education and leadership development to explore future EURORDIS Open Academy opportunities.
Jessica is also happy to connect with others in the Canadian rare disease community who are interested in learning more about the EURORDIS Open Academy, patient engagement in data and AI, or her experience at the training. Connect with Jessica.