Meaningful Health Data for Research and for Industry
Short introduction describing the activities and the scope of the group:
The Health Data IG was 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. These were attended by several researchers and professionals from diverse backgrounds, who discussed a number of relevant issues and expressed significant interest in forming the proposed Interest Group and helped shape its focus to reach the RDA endorsement.
The Interest Group aims at filling a gap in the RDA subject map formed by its current WGs and IGs as 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 first official meeting of the Health Data IG during the 8th RDA Plenary Meeting in Denver was in fact titled “Health Data Privacy & Security issues”.
A first internal TC of the IG was held in December 2016, in order to identify the next meeting priority focus.
Additional links to informative material related to the group i.e. group page, Case statement, working documents etc
For further information see:
Health Data Interest Group page: https://rd-alliance.org/groups/health-data.html
Updated Health Data IG Charter (taking into account the TAB comments): https://rd-alliance.org/group/health-data/case-statement/health-data.html
Health Data Interest Group Minutes Denver: https://www.rd-alliance.org/health-data-ig-minutes-denver
Health Data Interest Group First TC: https://www.rd-alliance.org/1-tc-health-data-ig-22-dec-2016
The objectives of the forthcoming Barcelona meeting are:
• Assessing the differences between US, Australia and EU regulation of health data, especially with regard to anonymised and pseudonymised data as well as to scientific usage.
• Mapping existing practical policies, relevant projects, and experiences related to health data, in view of prioritizing further issues and activities the IG will engage in
• Identifying other groups’ activities
• Considering the value of industry participation in health data and discussing how to engage partners from industry in the HD-IG.
(moderation: Edwin Morley-Fletcher, President of Lynkeus)
1. Short introduction recalling the precursor sessions (P6, P7, P8), issues description (Yannis Ioannidis, President and General Director of the ATHENA Research and Innovation Center) [10 minutes]
2. Panel on how to define anonymization and pseudonymization of Health Data and requirements of Open Science (Rocco Panetta, Partner, Head of Privacy & IT Compliance Department at NCTM Legal Firm and Becca Wilson, Bristol University, UK, replacing Jonathan Tedds, Senior Research Fellow in Health and Research Data Informatics in the Department of Health Sciences at the University of Leicester) [30 minutes]
3. Further in-depth themes sprouting from Health Data: participants’ presentations of some relevant projects and experiences (data provenance, data comparability and data traceability in biotechnology, Joerg Geiger*, Manager systems biology and biobanking at University of Wuerzburg); mapping ongoing initiatives in the Health Data domain and EU Commission perspective (Leslie D. McIntosh, Professor of Health Informatics at Washington University School of Medicine; Ellas Papadopoulou*, Legal Officer European Commission DG RTD, DIR “E-Health"); Drag-in industry participation (Spyro Mousses*, PhD CHOC Children’s Hospital of Orange County), other speakers submitting topics and slides [30 minutes]
4. General discussion and wrap-up [20 minutes]
* speakers to be confirmed
The minutes of the meeting will be published at the latest one week after the event in the HD-IG wiki at https://www.rd-alliance.org/group/health-data/wiki/health-data-wiki
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 (firstname.lastname@example.org, email@example.com, firstname.lastname@example.org, email@example.com, firstname.lastname@example.org) by March 27th, 2017.
Group chairs serving as contacts: Edwin Morley-Fletcher
Type of meeting:Working meeting
Group maturity: 6-12 months