Interview with Milana Trucl, European Patient’s Forum

The European Patients’ Forum (EPF) is one of the most prominent civil society organisations active in health policy at European level, representing the collective voice of the estimated 150 million patients living with various chronic diseases throughout Europe. EPF is an umbrella organisation of patient organisations across the EU and a driving force to advance patient empowerment and involvement in EU health policy debates, aiming to ensure equitable access to high-level, patient-centred care for all patients in Europe. Founded in 2003 and based in Brussels, EPF engages in policy advocacy and campaigning, and participates in EU-funded projects, organising educational and policy events, and capacity-building initiatives.We spoke to Milana Trucl, EPF’s Policy Officer to find out more about the intersection of AI and healthcare.


EPF represents patient organisations across Europe. What’s the relevance of AI in this context?


Milana: As a cross-disease umbrella patient organisation, EPF is regularly asked to provide a patient perspective on various health policy initiatives, including health data and AI. A poor understanding of AI in health and its impact on patients could limit our ability to ensure a strong patient voice in policy discussions with EU institutions and stakeholders. It is therefore crucial that patient organisations acquire sufficient knowledge and skills to understand the complex interaction between AI and health in order to ensure impactful advocacy.

Furthermore, as AI is increasingly deployed in healthcare practices, including self-care, prevention and wellness, there is an urgent need for patients to acquire a higher level of AI literacy. Better AI and digital health literacy would empower patients, increase the benefits of medical AI tools and minimise potential risks linked to misuse. EPF can play a key role in improving AI and digital health literacy through knowledge and skills-building activities, and support to national patient organisations.


Funding from the European AI Fund has been in part dedicated to capacity building on AI within your organization. In your view, what is key for the sector to understand about AI and the infrastructure around it?


Milana: It is important that patient organisations understand the applications, risks, benefits and ethical and societal impacts of AI in healthcare. An active and well-informed patient community can make a positive difference for patients when engaging in discussions on AI policies impacting on healthcare, both at EU and national levels. Capacity-building activities are therefore crucial to fill the knowledge and resource gap and enable meaningful advocacy. This would also enable patient representatives to be better equipped to participate meaningfully in AI development, including co-design, which would potentially result in greater trust in AI tools used in healthcare.


What are the main obstacles you have to overcome in your work?


Milana: Due to the dynamic EU policy landscape and the broad EU health policy agenda, it is very often difficult to ensure that patient organisations develop the necessary expertise in all fields relevant to our members’ needs. This is mainly linked to a lack of resources, as insufficient funding does not allow many patient organisations to hire the adequate number of people needed to ensure a constant focus and dedication to all areas of interest to the patient community. Digital health policy, and in particular AI, is constantly evolving and has become a high priority on the health policy agenda. While this is a very positive development, it also means that our knowledge and skills need to keep up.

How do developments on AI legislation intersect with other initiatives on health policy?


Milana: Artificial intelligence in health depends on the availability of large amounts of good quality health data. If the available data is insufficient, of poor quality, inconsistent or biased, this can severely limit the potential of medical AI. Another issue is the lack of interoperability and standardisation of data sets, such as electronic health record systems (EHRs). Access to large datasets and the interoperability of EHRs are currently being discussed as part of the European Health Data Space (EHDS) proposal, which will promote better re-use of health data, including by emerging AI algorithms. It is therefore paramount that these two pieces of legislation are fully aligned to avoid unnecessary confusion, complexity and duplication that could potentially impede rather than facilitate progress and positive application of AI for the benefit of patients.

We are also involved in advocacy for more person-centred care. While the organisation and delivery of healthcare is a Member State competence, there is much to be done in changing medical culture and care practices, and EPF is actively advocating, amongst other things, for better information for patients, communication and shared decision-making. An important future area to keep an eye on is how the digital transformation (including deployment of AI) changes the relationships between patients and medical professionals/healthcare providers.


What is your vision for a healthcare system that utilizes AI and digital tools to uphold patients’ rights?


Milana: Artificial Intelligence in healthcare has the potential to bring great benefits to patients, but only if it is coupled with acceptance and trust. Given the potential benefits and risks of AI, co-designing AI medical tools together with the patient is the only way to ensure that policy decisions are aligned with patients’ best interests. This would also prevent patient involvement from being simply a ‘tick box’ exercise without any meaningful impact.

AI must be seen as a support tool to improve the care delivered by healthcare professionals (HCPs), not as a replacement. It is therefore essential to ensure human oversight of AI-based decisions. Biased and poor data, or badly designed systems can lead to misdiagnosis and ineffective treatment, and it has to be ensured that these are identified from the outset. Furthermore, a lack of digital skills and digital health literacy, for both patients and HCPs can also limit the potential of AI in healthcare. Therefore, we believe that empowering people by enhancing skills and literacy is a prerequisite for making the most out of AI-based innovation.


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