Health data and artificial intelligence (AI) undoubtedly hold a promising future within the realm of technology and research, with the potential to have a substantial impact on patients’ lives.

During the Data Saves Lives bootcamp held in Lisbon, Portugal, earlier this year, European Patient Forum (EPF) members delved into their understanding of AI and its potential application within their respective disease areas. Among the topics discussed, a consensus was reached among the representatives regarding the lack of patient involvement in the design of AI applications. This gap is partially due to limited awareness of the existence of patient groups and their potential to offer valuable insight for AI projects. Conversely, varying degrees of digital literacy and technology access exist among different demographics, emerging from generational, geographical, and economic disparities.

I have personally observed these discrepancies both during my studies and in my current job at the European Federation of Allergy and Airways Diseases Patients Association (EFA). On numerous occasions, we have delved into the dynamics between patients, healthcare, and digital data. For example, during the European Allergy and Asthma Youth Parliament at the European Youth Event 2023 in Strasbourg, France, participants emphasised the significant potential of AI in healthcare and prevention, along with the risk of both underuse and misuse. They also stressed the importance of ensuring a thorough digital transition that includes accessibility and literacy for all. Similarly, in EFA’s DIGI_IT project, it was revealed that the willingness to adopt technology varies based on the age of patients with specific diseases. For instance, asthma patients generally have greater enthusiasm for adopting health technologies compared to chronic obstructive pulmonary disease (COPD) patients, who tend to be more skeptical. Interestingly, however, the latter group shows a higher tendency to use more e-health technologies compared to asthma patients.

Consequently, the digitalisation of healthcare and the widespread adoption of digital health tools should be reinforced through greater investment in digital literacy programmes that are aimed at the general public and patients. In this regard, patient groups can take the lead by advocating for these initiatives and offer accessible training using everyday language to their members. This approach is crucial to dispel misunderstandings about AI and also to ease the concern that this subject is too complex to understand. This strategy enables us, as a society, to communicate effectively and demand solutions that are more patient-centric, where patients and their associations play a vital role.

Finally, digital health and AI hold substantial promise for patients and the broader public. Nevertheless, there is still space for enhancement to make them more patient-friendly and accessible to everyone. Patient groups could play a pivotal role in educating patients about these matters. Ultimately, the initial step that each of us can take is to encourage curiosity, seek knowledge, engage experts for guidance, and invest in AI education for patient groups. Starting dialogues and improving collaboration between industry and researchers is also important.