KBF Focus: Strengthening patients’ voices in the debate on AI in healthcare


This article is featured in the King Baudoin Foundation newsletter for June 2021.

link to KBF article

The European Patients’ Forum aims to be the go-to “voice of patients” when it comes to strengthening systems and improving health outcomes via EU policymaking. As part of its work on digital healthcare, a new grant from the EU AI Fund, co-founded by the King Baudouin Foundation, will help it bring the patient perspective to the debate over the use of artificial intelligence (AI) in the sector.

Artificial intelligence is already being used in the health sector and has the potential to transform medical research, the delivery of services and patient self-care.

The technology is showing promise in the early detection of diseases like skin cancer, by interpreting scans or images and ‘learning’ what they mean. It can be used to analyse huge datasets to develop new antibiotics or detect patterns across millions of patients. Phone apps can even use AI to help patients self-manage chronic diseases like arthritis. At its best, AI can free up time and resources and empower patients.

But the potential uses of AI technology also set off alarm bells for many people. These include the issue of undermining quality of care by going too far in replacing human intervention. Concerns around the safe and ethical use of health data, patient consent and privacy are other key debating points. For example, disclosure of information about someone’s mental health could lead to them being stigmatised at work. And patients want to know who will be held responsible when the machines make mistakes?

Understanding what AI means can be challenging. While many definitions exist, it refers to “machine-based systems that can make predictions, recommendations or decisions influencing real or virtual environments”, according to the European Commission’s digital strategy. Such systems are often described as ‘mimicking’ the problem-solving and decision-making capabilities of humans.

Guarding patients’ interests

The European Patients’ Forum (EPF) is one organisation trying to unravel this complex issue and campaign to ensure that patients’ interests remain at the heart of the discussion.

Putting patients’ voices and experiences at the centre of healthcare policy and services has been its mission for nearly two decades. This period has seen the sector revolutionised by scientific advancements, societal change and technological developments – including AI and big data.

“We carry out our work primarily by representing the 77 European patient organisations that make up our membership. They provide expertise at both national and disease-specific level, from Alzheimer’s to cancers, to osteoporosis or migraines,” says communications manager Dante Di Iulio.

Focusing on those with chronic conditions, EPF acts as an intermediary between the patient community and EU policymakers: “We campaign to keep health literacy and patient empowerment high on the agenda, with the aim of improving people’s health,” he added.

While its projects include a range of topics – including work on high-risk medical devices or clinical trials – much of EPF’s focus is now directed at the rapidly-evolving area of digital health.

AI Fund grant

To help with this work, EPF has been awarded a €90,000 grant from the European AI Fund, set up by a consortium that includes the King Baudouin Foundation. Set up to help strengthen civil society’s voice in debates on Europe’s digital future, one of the Fund’s aims is to bring newer voices to the fore.

EPF policy advisor Michele Calabrò says it’s important that their members are heard on AI, which can affect every part of healthcare.

“AI can have an impact on self-care, prevention, wellness, or facilitating diagnosis. It can give sense to large health datasets to support innovation. It ranges from the individual level, such as chatbots or something that can be used on your phone, to making sure whole health systems are performing in a more efficient and evidenced way,” he says.

But attention also needs to be paid to issues around the quality and potential bias of data, and ethical issues, adds Calabrò.

“It's important to consider the risk of how we could limit or interfere with human autonomy, which includes complex judgements. AI should be a tool that improves how healthcare is delivered in a personal way but doesn't increase isolation or cause confusion in patients.”

There is also a risk of over-diagnosis and misdiagnosis: “AI that is not trained in the proper way might become too good at picking things up. Going around the expertise of healthcare professionals could potentially even lead to unnecessary or wrong treatments.”

“The human component is very important in care,” he added.

‘Challenges or obstacles’

The nature of future applications across society is now being shaped via the European Commission’s proposal for a new Regulation on AI. Among a range of applications it has categorised as ‘high risk’ is the use of AI in robot-assisted surgery.

“The patient community has already started having its say on AI, and now is the time to step up engagement,” says Calabrò.

He said the Fund grant will help EPF carry out patient-focused research to establish “where we stand” on AI and “where the opportunities and potential challenges or obstacles” lie. They will also host educational webinars in collaboration with experts, and collate an online resource of key information, relevant research and policy developments.

And a survey on AI conducted last year among patient groups and individuals, in English, will now be issued in other languages.

Pandemic exposed weaknesses

AI has also played a role during the Covid-19 pandemic, such as modelling the spread of cases, and the crisis has accelerated the move towards digitalisation.

EPF says the situation has “exposed gaps and weaknesses in health systems that the patient community has long been aware of,” which underlines the importance of strong European health policy collaboration.

Whether talking about digital or ‘traditional’ healthcare, it’s more important than ever for EPF’s members to be “valued partners in creating equitable, person-centred, accessible and sustainable healthcare systems based on patients’ unique expertise,” said Di Iulio. “Healthcare systems, policymakers, and industry are really realising that they need a strong patients’ voice to drive better health in Europe.”

#EPFCongress2021: www.epfcongress.eu

The European AI Fund
A philanthropic initiative that aims to shape the direction of AI in Europe by promoting a diverse ecosystem of public interest and civil society organisations working on policy and technology. The fund is supported by national, regional and international foundations, including KBF.