How can we trust something we don’t know?
Towards maximising the use of health data for innovation and recovery
By Carina Dantas and Karolina Mackiewicz, ECHAlliance
Many stakeholders, such as social care organisations that contribute to health provision and integrated care services across Europe, are still mostly unaware of how the European Health Data Space can work and how their contribution can be mutually beneficial. And how can they trust something they don’t know?
The COVID19 pandemic confirmed how essential it is to have updated and high-quality health data. Data is a key to shape health policies and provide citizens with tools and medicines that are effective and that contribute for their wellbeing.
However, we still struggle to access, use and re-use health data. What are the main challenges encountered and how can we overcome them towards success?
Data is extremely important in the current era of AI and machine learning applications because these apps are developed based on what they learn from data. Thus, the quantity and quality of data directly impacts on their accuracy and inclusiveness, to ensure their predictions can be generalised to different populations, especially for underrepresented subjects. Or at least, developers need to be aware of their limitations and find ways to overcome the hurdles they generate.
In what concerns the sociotechnical factors to working with health data at scale, trust and trustworthiness are the foundational aspects. Trust is composed by a multifactorial myriad of aspects that include purpose, governance, ethical and legal considerations, among others, and it has been approached by many recent policy documents, such as the AI Act or the Data Act.
However, many stakeholders, such as social care organisations that contribute to health provision and integrated care services across Europe, are still mostly unaware of how the European Health Data Space can work and how their contribution can be mutually beneficial. And how can they trust something they don’t know?
Most of the data sharing activities foreseen to maximise the use of health data for innovation and recovery do not expect access to individual data as such, at least not at the patient level, but mostly anonymised and aggregated data and thus the challenges regarding privacy and security may not be as difficult to overcome as it appears to the common eye. Thus, more clarifications are needed to define the requirements for different specific scenarios, as well as the professional shared responsibilities on the anonymisation of data at the organisations’ level to be sure all will work well.
Also, within this same scope, common interoperability standards play an essential role in addressing some of the challenges around data quality, trustworthiness, and the potential for generalisation.
It is still acknowledged that most citizens need further information regarding data storage, access and sharing, as well as better digital skills. This requires professionals and policy makers in this area to simplify language and preferably use materials with visual information that makes it more accessible to people in different contexts, literacy, and education levels.
During the COVID19 pandemic the use of some digital tools, such as the COVID pass, may have opened the way for people to better understand the potential benefits of such tools and thus be an enabling factor for the future. Also, many risks, e. g. as cybersecurity, were better acknowledged as extremely important to address.
However, the main issue is that the pandemic clearly showed that not using data is also contributing not to have people duly treated, and thus harming them. This is perhaps the most controversial ethical debate – on one side there is the need to ensure that data sharing is done according to the highest ethical standards; but not doing it or delaying it to ensure those standards may lead to less adequate health care and thus also cause harm.
A balance between these aspects is needed from a policy level, but also from a bottom-up approach, that is, more literate, engaged citizens and organisations discussing these issues with credible information to effectively work towards a healthier and happier society.
This article was written based on the discussion “How do you maximise the use of health data for innovation and recovery?” at Digital Health Society Summit, organised on 4-5 October 2022 by The Digital Health Society, with the participation of Giovanna Ferrari (representing GravitateHealth project), Barbara di Camillo (Brainteaser project), Oscar Zanutto (ValueCare project) and Nigel Hughes.
You can watch the recording from the session here.