Transparency and Trust in Health Data

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05 Dec 2019
Group(s) submitting the application: 
Meeting objectives: 

While open data sharing practices have moved to the forefront of many scientific disciplines, there is still much to define when it comes to sharing health data due to pressing privacy concerns. Yet,  the boundaries for effective and secure data sharing are now set clearly in many jurisdictions, and especially in the EU GDPR (General Data Protection Regulation),  and can be met with vigilant practices and appropriate privacy-preserving solutions.

A particular area of interest is the distinction in the GDPR between pseudonymisation and anonymisation of health data.

The first relates to the processing of health data ways by which they can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the personal data are not attributed to an identified or identifiable natural person. The second, i.e. anonymisation, is the process by which health data are irreversibly altered in such a way that a data subject can no longer be identified directly or indirectly, either by the data controller alone or in collaboration with any other party.

There is a well-known risk of trade-off between information richness of health data and their re-identifiability, though there are also advanced ways for decoupling the link between private information and the health data’s information content.

Current difficulties in knowing how to concretely address data sharing restrict the possibility of adequately applying big data and artificial intelligence to the healthcare domain. Furthermore, bio-medical researchers and pharma companies are often hindered in transparently reporting their findings due to privacy concerns.

The Health Data Interest Group will use the session to discuss what can and should be implemented when presenting work/research on health data to maintain individuals’ privacy and trust in the scientific integrity of the performed work.

Meeting agenda: 
  • Continue discussions of the importance of health data
  • Identify signals of trust with health data
  • Analyse pseudonymisation and anonymisation issues
  • Identify general recommendations for:
    • facilitating the usage of big data and artificial intelligence
    • improving transparency of scientific work with health data
Target Audience: 

For this open session, we invite Policymakers for Healthcare; Clinicians wanting to use data technology to improve their practice; Biomedical researchers using data-driven analytical techniques in their research life-cycle; Healthcare Data Scientists dealing with data mining, machine learning, physiological modelling and image processing technologies and the data these produce; Health bioinformatics legal experts; Healthcare and Health Maintenance Organisation administrators; Pharmaceutical industry researchers and manufacturers; Medical equipment researchers and manufacturers, in silico modelling, testing and clinical trial experts; and, participants form other related WG/IG.

Brief introduction describing the activities and scope of the group: 

The Health Data Interest Group (HDIG) was officially instituted in 2016 following successful BoF Sessions during the 6th RDA Plenary Meeting in Paris and the 7th RDA Plenary Meeting in Tokyo. It is now a mature RDA component, actively involved in the 8th RDA Plenary Meeting in Denver with a session titled “Health Data Privacy & Security issues”, at P9 in Barcelona with a session focused on “Meaningful health data for research and for industry” at P10 in Montreal with a session on “Health data mapping and diverging trends in health data protection”, at P11 in Berlin on “First results on RDA Adoption and Training Guide for Reproducible Data Service Workflows and diverging trends in Health data protection” and at P12 in Gaborone, Botswana, where the topic of “Genomic data in the light of privacy rules” was addressed. The last two meetings in Philadelphia (P13) and Helsinki (P14) were the occasion for HDIG members to discuss more in detail and on a use-case basis the theme of Artificial Intelligence, with special regards to “AI medicine: preconditions to apply AI to medicine and privacy concerns (after the EU GDPR)" and “Hospitals’ experiences towards a large-scale data sharing ecosystem for AI”.

The Health Data IG sessions are becoming a moment where new topics which are gaining rising interest for scientific research communities – such as the entry into force in May 2018 of the EU General Data Protection Regulation (GDPR) or Artificial Intelligence applied to Health – can be debated within a wider and competent audience and with a worldwide perspective.

In fact, the HDIG was at the beginning the only RDA group focusing on the intricacies of Health Data, especially as it relates to privacy and security issues in Healthcare but not only. Up to now, many new groups are starting to explore different aspects related to Health Data, and in particular two working groups (WG) spread from the HDIG, one on “Blockchain Applications in Health”, and another one on “Reproducible Health Data Services”, both endorsed by the RDA.

Short Group Status: 

Recognised & endorsed (since 2016).

Estimate of the required room capacity (Hybrid plenary): 
Type of Meeting: 
Working meeting
Remote participation availability (only for physical Plenaries): 
Avoid conflict with the following group (1): 
Avoid conflict with the following group (2):