Health data mapping and diverging trends in health data protection
A short introduction describing the activities and the scope of the group:
Officially instituted in 2016 following a couple of rather successful BoF Sessions during the 6th RDA Plenary Meeting in Paris and the 7th RDA Plenary Meeting in Tokyo, the Health Data interest group is a mature RDA component, actively involved in the 8th RDA Plenary Meeting in Denver with a session titled “Health Data Privacy & Security issues”, and at P9 in Barcelona with a session focused on “Meaningful health data for research and for industry”. All sessions were attended by several researchers and professionals from diverse backgrounds, who discussed a number of relevant issues as the Health Data IG is 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.
The HDIG is now looking forward to the next plenary assembly to sum up the initiatives and activities so far performed, with the aim of producing some outputs related to the main themes debated to be possibly presented at the RDA 11 Plenary in Berlin 2018.
With this aim, the HDIG session at P10 will focus on two topics: mapping the health data domain and diverging trends in health data protection.
Many agencies have developed standards guiding rigor, reproducibility, and reporting practices. Yet, it is still difficult to robustly assess the scientific rigor used in research based on the available information in scientific publications. To address this, the IG is both determining the elements needed to make research reproducibility possible by mapping data elements as well as developing a software tool to facilitate automatically extracting these elements.
These barriers are being addressed through the following:
1. The RepeATFramework, a framework of essential elements to successfully report and reproduce scientific methods within biomedical research sciences;
2. RepeATAutomator, a software application to interactively detect, extract, and evaluate text in published clinical literature against the RepeAT Framework. While these have undergone initial development, testing, and review within a small community, this has not been vetted through the international RDA community.
Furthermore, in view of the interesting outcomes of the discussion on Data Protection policies at P9 in Barcelona, and of the diverging trends which are taking shape in the EU and in the USA, part of the session will be dedicated to analysing the key sections on which to structure a report on enactment of, and the compliance with, the EU General Data Protection Regulation (GDPR) in as far as it concerns health data, in comparison to the current developments in other geographical areas, to be ready for P11 in Berlin.
Additional links to informative material related to the group i.e. group page, Case statement, working documents etc:
Health Data Interest Group page: https://rd-alliance.org/groups/health-data.html
P9 Barcelona Health Data IG session Presentations: https://www.rd-alliance.org/p9-barcelona-health-data-ig-session-presenta...
Preliminary documents on mapping the domain activity: https://www.rd-alliance.org/group/health-data/wiki/mapping-domain-activity - GitHub repo: https://github.com/ripeta
• Present and Discuss the current work within “mapping the health data domain” activity and see ways in which this will be related to the Atlas of Knowledge (AoK) of the RDA
• Highlight the diverging trends emerging in health data protection regulation and privacy standards, taking into account also the threats to the security of data which have abundantly characterised 2016 in various countries
• Discussing expected/proposed outputs for RDA Berlin 2018
(moderation: Yannis Ioannidis, President and General Director of the ATHENA Research and Innovation Center; Edwin Morley-Fletcher, President of Lynkeus)
1. Short introduction recalling the precursor sessions (P6, P7, P8, P9), issues description (Edwin Morley-Fletcher, President of Lynkeus; Yannis Ioannidis, President and General Director of the ATHENA Research and Innovation Center) [15 minutes]
2. Presentation and discussion on facilitating reproducibility within biomedical science and Health Data domain (Leslie D. McIntosh, Professor of Health Informatics at Washington University School of Medicine) [30 minutes]
3. Planned report on diverging data protection regulations and security standards referring to health data [30 minutes]
4. Open discussion and further themes in view of P11 in Berlin [15 minutes]
For this open session, we invite 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, HPC and distributed computing experts, Policy-makers for Healthcare, 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, as well as participants form other related WG/IG.
Short contributions with 1-2 slides are welcome; please notify the organizers Yannis Ioannidis, Anthony Chang, Edwin Morley-Fletcher, Ludovica Durst, and Fotis Karayannis, sending an email (email@example.com, firstname.lastname@example.org, email@example.com) by September 12th, 2017.
Group chair serving as contact person: Edwin Morley-Fletcher
Type of meeting: Working meeting
Session Room: International 1
Session Time: Thursday 21 September, Breakout 7, 09:00 - 10:30
Collaborative session notes:
Session slides and materials:
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