Health Data


Group details

Yannis Ioannidis, Anthony Chang, Edwin Morley-Fletcher
Secretariat Liaison: 
Fotis Karagiannis
TAB Liaison: 
Rainer Stotzka
Case Statement: 

The proposed Interest Group on “Health Data” (HD-IG) is a long-term initiative in the framework of RDA. It follows a rather successful BoF Session during the 6th RDA Plenary Meeting in Paris, which was attended by over 35 researchers and professionals from diverse backgrounds, who discussed several relevant issues, expressed significant interest in forming the proposed Interest Group, and helped shape its focus as presented here. The Interest Group will fill a gap in the RDA subject map formed by its current WGs and IGs, as at the moment, there is no RDA group focusing on the intricacies of Health Data, especially as it relates to privacy and security issues in Healthcare. Establishment of this IG will also enrich the set of communities involved in and contributing to RDA, as there are several professions as well as research disciplines that revolve around Health Data.




Link to TAB review

Recent Activity

19 Apr 2017

Health and medical data sharing webinar series in Australia

Hi all
In case anyone is interested, we have an upcoming health and medical
webinar series. We are based in Australia, so some information is location
specific, but some will be relevant to health research and data sharing in
other countries. The webinars are recorded so if they're in the middle of
the night for you, just register and we send everyone who has registered
links to the recordings after.
Here is the information:
The Australian National Data Service (ANDS )

30 Mar 2017

Re: Health Data RDA - Visualisation

I am looking forward to our follow-up meeting (in 30 minutes for the first meeting). Please note that Doodle has the time correct and is corrected below.
The agenda includes:
* An overview of the work to date
* Adding individuals who would like to contribute to the map
* Reviewing the categories and contents
If you would like to look at the current state of the simplified visualization, please see:

26 Mar 2017

Health Data RDA - Visualisation

The follow-up meeting for "Health Data RDA - Visualisation"will be:
Thursday, March 30, 2017 9:00 (CDT-US) / 15:00 (CET-Europe)
Thursday, March 30, 2017 17:00 (CDT-US) / Friday, March 31, 2017 9:00 (AEDT – Australia)
This link should work for both meetings:
Dial-in phone numbers:
Access Code: 765-004-669
United States: +1 (646) 749-3117
Australia: +61 2 8355 1038
Austria: +43 1 2530 22500

23 Mar 2017

Research Data Alliance DDPIG Interim Outputs for review and comment

Dear RDA Interest Group members,

We wish to share with you the draft outputs created by three of
the Task Force teams of the RDA Data Discovery Paradigms Interest
Group. We think one or more of these outputs are relevant to the
work your IG is doing. Your thoughts and feedback on the three
interim documents will be greatly appreciated:

14 Mar 2017


My name is Dewayne Branch.
I need a letter of support from this group as I am submitting my fellowship
application where I want to be a part of this group and the health data
I want to become an expert in linking environmental data, health data from
sensors, drones, or any other disparate systems for a data intelligence or
data fusion that can lead to better predictive analytics or at least set-up
a virtual geospatial library/data center that could support such.

01 Mar 2017

2017 Call for RDA Fellows

Good morning Health Data Leadership:,
My name is Joe Webb and I am a doctoral student at Iowa State University in
an integrative PhD program applying Bioinformatic techniques to Big Data
across multiple disciplines (Genetics, Neuroimaging, Metabolomics,
Proteomics, Clinical Health Data, Psychological Cognitive Data).. I
recently joined the Research Data Alliance because I primarily work with
big health data to understand genetic underpinnings of neurodegenerative
diseases such as Alzheimer's and Parkinson's disease. In addition to

26 Feb 2017

2017 Data Share Program Fellowship Applicant

Dear Health Data IG Leadership:
I am a PhD student studying Health Outcomes Research at Saint Louis
University with research interests in utilizing social media data for
predicting patient reported outcomes such as Health-related Quality of Life
(HrQoL). HrQoL, a concept that embodies the patients' perception of their
own health, is a dynamic and robust measure for evaluating disease burden
and the quality of health care overall. Traditionally, these measure are
provided via surveys and are expensive to implement. However, patients