The European Health Data Space implies a rethink of the “reference architecture” needed to focus on data use and re-use. Today, there are many plans underway to ensure that data – including health and care data – can become more interoperable and less siloed, and can be used legitimately for uses other than its original purpose. For this trend to continue smoothly, citizens need to be able to engage concretely in data sharing, and the data itself needs to be of sufficient quality. Data intermediaries are emerging as new actors that can help in the creation of conditions for data sharing which are both ethical and efficient.
Over 30 people attended an in-depth webinar held by EHTEL on 8 November 2021 on data intermediaries and how these intermediaries can add value to data.
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Data sharing and data intermediaries in the spotlight
Data and data sharing is now very much in the spotlight, underlined Tino Marti of EHTEL. Faced with a wealth of data, many players are feeling encouraged to move towards greater interoperability of data and to avoid the building of data silos. The webinar was therefore situated in the context of the Data Governance Act: which proposes to offer access to data held by public bodies; regulate data sharing through data intermediaries; and encourage data altruism.
Introducing the challenges underpinning data intermediaries and the ways in what they can add value to data, Luc Nicolas of EHTEL pointed out some of the fundamental questions asked by many people. Examples include: What happens when you’re interested in sharing your data, but you don’t have a clear idea about how this can be done? Where can you go when you have concerns about your own privacy, your data security, how complex or how usable the systems on offer might be? Ultimately, what if you are concerned about any possible illegitimate uses of your data? It was the ambition of the webinar to cast light on answers to these queries.
Background to data intermediaries: Insights from OPEN DEI
To introduce the general developments, Angelo Marguglio of Engineering, an Italian company which is one of the partners in the OPEN DEI project, offered insights into its work.
OPEN DEI focuses on large-scale pilots in four different organisational and industrial fields: one of them is healthcare. For OPEN DEI, the European Health Data Space is very much on the right track since it is built on European values and a European legislative framework: the foundational ideas are located in the Digital Compass 2030. OPEN DEI sees the cloud as enabling the data economy in the direction of “free and sovereign data spaces”. Many of these data sharing initiatives are described as being “data agnostic”. OPEN DEI perceives as welcome the building of a more business mindset, increased business skills, and appropriate and solid standards and platforms. Many different business relationships need to be encouraged, including business-to-business (B2B), business-to-citizens (B2C), and citizen-to-business (C2B), that involve data intermediaries and their services, and data cooperatives. Angelo therefore drew attention to an International Data Spaces Association (IDS) reports on “Design principles for data spaces”.
As examples, Angelo especially pointed out illustrative work being done in the Netherlands. In the health and care fields, various initiatives involving a range of associations and enterprises have come to the fore. Examples include a Dutch ICU data warehouse, MedMij, Melody Healthcare, Nictiz, and the Personal Health Train.
As a general background, Angelo described the work of Gaia-X, a European secure, decentralised, federated data infrastructure, which encourages synergy among sectors. Overall, Europe’s desire is to make access to data easier, structure data well, encourage support for data intermediaries, and appropriate certification of such intermediaries, and – last but certainly not least – encourage ‘data altruism’.
Examples of data intermediaries: Investigations undertaken by InteropEHRate
Luc Nicolas of EHTEL took up the baton and described data intermediaries in more detail. Luc listed the various purposes of data intermediaries, such as acting as data custodians (i.e., offering citizens a single access point to their data, bringing together both personal and non-personal data, providing analytical data services, and reportedly reducing both costs and risks). A number of barriers still, however, need to be overcome to ensure the smooth functioning of data intermediaries, including aligning incentives, addressing various gaps in knowledge, and providing adequate privacy-enhancing technologies.
In his presentation, Luc drew on the work of Unlocking the value of data, published on 22 July 2021, a report which comes from the United Kingdom.
Ultimately, it is data intermediaries that will help people, including patients, to increase the value of their data (including their health and care data), and build this on top of longitudinal health records – whether personal health records or electronic health records.
As examples of data intermediaries, Luc cited data custodians, data processors, and data collaboratives. Three of the data intermediary examples were indeed data custodians: Open SAFELY, AWS, and Genomics England.
Luc particularly delved into systems known as personal information management systems (PIMS), which are said to be “at the core of the citizen-centric data sharing approach”. (The InteropEHRate project, which supported this webinar, was itself described as “an example of a PIMS”.)
Several other recently started or experimental projects and initiatives, run in a variety of countries in Europe and further afield, were also cited as being worthwhile investigating. They include DECODE by NESTA, digi.me – a merger of two UK and USA-based firms, and the SOLID project.
Key to many developments has been the MyData initiative – an international not-for-profit organisation – which in 2020 wrote a paper about data operators (effectively, “data operators” are closely related to or even the equivalent of data intermediaries). The European joint action called Towards the European Data Space (TeHDAS) is in fact a member of the MyData initiative.
In Europe, data intermediaries in Europe are an emerging, and relatively new, type of organisation. Data intermediaries, as a concept, could be also applied in some particularly interesting fields e.g., genomics (the 1+ million genome initiative), often viewed as a citizen-centric data-sharing initiative. In 2022, the intention is to share, scale up, and sustain the initiative.
Experts offer their opinions on data intermediaries
A group of experts, such as Gabor Bella (University of Trento, Italy), Nikolas Molynaris (DeCentriq, Switzerland), and Isabelle de Zegher (b!loba, Belgium) were asked for their views on a number of questions related to data intermediaries. One of the speakers – Angelo Marguglio (Engineering, Italy) – also spoke.
The questions posed to the panellists included:
- Is the ‘market’ ready for data intermediaries?
- Are data intermediaries located in specific places? Are they widely international?
- Do data intermediaries need to be mobilised?
- Will data intermediaries ultimately locate their ‘data logs’ in one single place or in a variety of locations?
- What roles can data intermediaries play in the health domain?
- How should data intermediaries be selected and governed?
- Can data sharing be made more agile?
The experts expressed a variety of views on:
- The degree of market readiness.
- Who – or which players – should supply the data, including health and care data.
- The risks of data loss or data corruption, especially in data transfer.
- Users’ attitudes towards their own data and the relative value that they place on it.
- The role that people’s emotions play when systems developers are trying to build trust.
- Whether trust can be generated by mechanisms such as accreditation, certification, or even by the technologies themselves.
Overall, the panellists agreed that data intermediaries:
- Can play a pivotal role in:
- data-driven innovation.
- overcoming bottlenecks in the adoption of standards/standardisation.
- Must show transparency in their functioning for them to gain trust and credibility in data-related markets.
- Can become creators or facilitators of ‘health data ecosystems’, thereby enabling a citizen-centric health data sharing approach.
Several ideas voiced in this workshop are similar to EHTEL’s vision of the European Health Data Space (EHDS) on access to and exchange of data for healthcare, expressed in the association’s submission to the EHDS public consultation held in July 2021.
The topic of this webinar was also expanded during the course of EHTEL’s 2021 Thought Leader Symposium, in two sessions. First was the session on “Enabling citizens to be in better control of their own data” held on 30 November 2021. Second was the “Forward-looking session: Genomics for digital health services” held on 1 December 2021.
- Unleashing personal health data for care and research: The InteropEHRate approach
- Unlocking the value of data: Exploring the role of data intermediaries