Lisbeth Snede of PiCC United asks whether patients are truly shaping AI in healthcare, or simply living with the consequences.
As artificial intelligence transforms healthcare, one fundamental question remains: Are patients genuinely shaping the technologies that influence their care, or simply living with the consequences? Lisbeth Snede, President & Strategic Lead of PiCC United, explores why meaningful patient involvement must go beyond consultation to influence AI development, communication, governance and implementation. Drawing on international discussions about AI, patient trust and healthcare innovation, she calls for a shift from measuring patient participation to demonstrating real impact – ensuring that technology delivers value that truly matters to patients.
By Lisbeth Snede
President & Strategic Lead, PiCC United
International Patient-Led Non-Profit Foundation
Artificial intelligence is rapidly transforming healthcare. From clinical decision support and diagnostics to medical information, research and patient communication, its potential is enormous.
But amid the excitement about technological progress, one fundamental question deserves greater attention:
Are patients genuinely shaping the future of AI in healthcare, or are they simply expected to live with the consequences?
At PiCC United, we believe that meaningful patient involvement must go beyond consultation. Patients and caregivers should help define the problems, influence the solutions and evaluate whether innovation delivers value in real life.
Healthcare innovation often follows a familiar pattern: researchers identify a problem, developers design a solution, healthcare professionals assess its potential, and patients are invited to provide feedback.
But what if the original problem was never defined together with patients?
An AI tool may improve efficiency while increasing the burden on patients. A digital solution may perform well technically but create barriers for people with limited digital literacy, disabilities or complex healthcare needs.
Technological success does not automatically mean patient value.
Through our involvement in international discussions, including the DIA AI Consortium and conversations about AI in Danish healthcare, we continue to emphasise the importance of bringing patient expertise into technological development from the beginning.
Patient experience is not simply another data source. It is expertise that can challenge assumptions, identify overlooked needs and help shape better decisions.
One of the questions we are bringing into upcoming international discussions is whether AI-generated medical information genuinely improves communication.
AI can make information faster, more accessible and more personalised. But if patients do not understand it, trust it or know how to act on it, have we really improved communication?
This is particularly relevant when AI-generated information influences healthcare decisions.
Regulatory compliance is not the same as patient understanding.
Medical information may satisfy regulatory requirements while remaining difficult for patients to interpret or apply in everyday life.
We must therefore move beyond asking whether information is accurate and available. We must also ask whether it is understandable, meaningful and useful to the people receiving it.
Patients should help determine which questions information must answer, which concerns it should address and how it should be communicated.
Trust cannot simply be programmed into an algorithm.
Data protection, cybersecurity, transparency and regulatory oversight are essential. But trust also depends on whether people feel heard, respected and able to influence decisions affecting their health.
As Europe advances its digital health ambitions, including the European Health Data Space, patient involvement in governance becomes increasingly important.
Who decides how health data are used? How are patient priorities reflected in decision-making? Who remains accountable when AI-supported decisions have unintended consequences?
Patients should not only be asked to trust the system. They should help shape the conditions that make the system trustworthy.
AI also offers opportunities to improve patient engagement itself.
It could help make complex research information more understandable, support multilingual participation, identify accessibility barriers and improve how organisations document patient contributions.
But technology must never become a substitute for human relationships or lived experience.
If AI-supported engagement excludes people with lower digital confidence or those already underrepresented in research and healthcare, we risk reinforcing the very inequalities we are trying to overcome.
Meaningful involvement requires diversity, accessibility and the recognition that patients and caregivers bring different forms of expertise.
Across healthcare and research, we have become increasingly skilled at organising patient advisory boards, consultations and workshops.
Yet participation is not the same as influence.
We need to move beyond counting how many patients were involved and start demonstrating what changed because they participated.
Did patients influence the design of an AI solution? Did their perspectives change how risks were assessed? Were accessibility concerns addressed? Did their involvement improve how information was communicated or how the technology was implemented?
These questions should become part of how we evaluate responsible AI innovation.
And meaningful participation must be properly resourced, with patient expertise recognised and fairly compensated.
Our work at PiCC United, alongside ongoing European collaborations and upcoming international discussions on AI, medical information and patient involvement, reinforces one central conviction:
Patients should not be the final checkpoint in healthcare innovation. They should be partners throughout the journey.
The future of healthcare AI should not be measured only by what technology can do, but by whether it improves what matters to the people it is intended to serve.
Because the real question is not whether AI will change healthcare.
It is whether patients will have the opportunity to shape that change.
PiCC United is an independent, international, patient-led non-profit foundation working to advance meaningful patient and caregiver involvement in healthcare, research and policy. We bring patient expertise into collaboration with healthcare professionals, researchers, industry and other stakeholders to help turn participation into meaningful influence and sustainable change.
Website: www.pccunited.org