Antw: Re: [healthdata] [healthdata] Health Data IG - Mapping the domain

Dear colleagues,
please allow for a short remark to the discussion on the mapping project. A comprehensive and concerted mapping of the
"health data" domain is clearly of fundamental importance to the IG. Yet the terms related to "health data" may be
understood in many different ways, depending on the particular context. When preparing a mapping of "health data" we
must be prepared to handle different, sometimes incompatible views like data source, data quality, data use and surely
several others. To avoid conflicting or contradicting constructs I would propose to distinguish the mappings with regard
to the respective context prior to assembling the mappings.
An example for clarification: "diagnosis" can be understood in the context of therapy, accounting, genetic defect,
pathology or clinical laboratory result, in every case meaning something different and pertaining to a different
quality.
Cheers
Joerg
Greetings,
As mentioned on the Health Data IG call, there is an interest in mapping the domain of ‘health data’. The purpose of
this activity is to both wrap our minds around this broad domain as well as to develop a means of communicating the
field to a larger audience.
What I would like to accomplish before the Barcelona RDA are twofold:
i) Brainstorm the constructs of ‘health data’
ii) Create a visualization of these constructs.
To accomplish these tasks, I suggest we have two meetings before the Plenary in order to present a working draft at the
meeting. If you are interested in participating, please provide your availability for the first meeting here:
http://doodle.com/poll/b6rn9xnnaw4y7tzi . I have tried to accommodate schedules based on the people who have reached out
so far. If you are interested in this but the times are good, please let me know.
Cheers,
Leslie
Leslie D. McIntosh, PhD, MPH
Director, Center for Biomedical Informatics
Assistant Professor
Washington University in St. Louis
660 S. Euclid Box 8118
St. Louis, MO 63110
314.747.7959 (O) or 314.200.5838 (C)
From: <***@***.***-groups.org> on behalf of Leslie McIntosh <***@***.***>
Date: Thursday, December 22, 2016 at 11:59 AM
To: "***@***.***-groups.org" <***@***.***-groups.org>
Subject: [healthdata] [healthdata] Health Data IG - Mapping the domain
Thanks Edwin, for hosting an informative session today for the Health Data IG.
As mentioned on the call, I would like to work with a small group to begin mapping this broad domain in order for us to
better frame our discussion and vision.
Health Data encompasses a broad range of perspectives both unique use-cases to the field (e.g., health data privacy)
and cross-cutting (e.g., data citation). It would be helpful to organize and map this domain along constructs, which
could be (but are not limited to):
Tools Employed (e.g., analytics - R, SQL; data capture - EPIC, OpenEHR)
Analytics (e.g., NLP, deep learning)
Sub-domains (e.g., genomics, clinical, public health, health communication)
Standards (e.g., ICD10, RxNorm)
Rigor and Reproducibility (including data transparency and accessibility)
Organizations (e.g., private, public, government)
A couple of examples that attempt similar efforts (some in other domains) include:
https://www.capgemini.com/blog/capping-it-off/2014/12/embarking-on-the-d...
http://nirvacana.com/thoughts/becoming-a-data-scientist/
https://www.healthcatalyst.com/wp-content/uploads/2014/06/infographic-wh...
If you are interested in getting this started with me, please contact me directly if you want to work on this
(***@***.***).
Cheers,
Leslie
Leslie D. McIntosh, PhD, MPH
Director, Center for Biomedical Informatics
Assistant Professor
Washington University in St. Louis
660 S. Euclid Box 8118
St. Louis, MO 63110
314.747.7959 (O) or 314.200.5838 (C)
On 12/11/16, 12:23 PM, "l.durst=***@***.***-groups.org on behalf of ludolynkeus"
<***@***.***-groups.org on behalf of ***@***.***> wrote:
Dear all,
As you know, the new RDA Health Data Interest Group (HDIG) had its first meeting during P8, in Denver, on 17 September
2016.
That meeting focused on “Privacy & Security” and was really successful. You can find its minutes on our RDA HDIG
webpage: https://www.rd-alliance.org/groups/health-data.html.
As a follow up and in preparation of P9 in Barcelona in April 2017, it is now high time to join forces and animate our
IG, starting from defining some appropriate topics for discussion in the forthcoming months.
As a first step, we suggest having one (or more) teleconference (TC), possibly clustering the group members according
to time zone preferences by the third week of December (20th to 22nd December).
The Doodle poll to identity your preference is open until Friday 16th December in the following address:
http://doodle.com/poll/6pr4uw47ctiawvnd.
Subsequent TCs will be planned for end-January and end-February 2017.
All those interested in being actively engaged in the IG and in planning its next session in Barcelona, as well as
those just curious to know what kind of issues the Interest Group is dealing with, are warmly invited to express their
preferences and hopefully attend.
In the initial HDIG Charter, some topics were identified as priorities but still need to be effectively discussed
within the IG. In particular, the focus of HDIG includes the following areas:
• Privacy and Security in Health Data: sharing best practices on pseudonymisation, anonymisation, differential privacy,
homomorphic encryption, secure multi-party computation, and dedicated blockchain applications; developing models for
dynamic consent that protect patients while enabling research; providing a forum for discussing, explaining and
responding to data protection regulatory issues.
• Data based Healthcare for Personalised Medicine: analytics applied to highly sensitive health data; disease signature
identification and stratification of patient groups; patient-specific simulation and prediction; exploring the potential
of health data usage in in-silico drug development and clinical trials.
• Health Data Organisations environment: defining a list of organisations dealing with Health Data to cluster with;
disseminating HDIG results within other relevant Health Data organisations.
What we would like to discuss in the forthcoming TC is which of these priorities to address first and put in our Agenda
for P9 in Barcelona. Furthermore, we would like to discuss the type of activities that we could initiate on these
topics. The following are some related ideas:
• Having thematic (physical or web) meetings on ongoing projects with experts in the relevant fields, to be promoted
also through the RDA website (newsletters/articles and events)
• Defining user scenarios with other stakeholders and representatives from Health Data Organisations who might be
involved in the next meeting
• Having joint meetings with related IGs/WGs in Barcelona and possibly establishing a particular WG on a more specific
topic (e.g., Blockchain)
Finally, during the TC we would like to also engage in the following:
• Have all of us share our experiences in relevant projects that might be presented in Barcelona or during other
thematic meetings
• Inform the HDIG about relevant Health Organisations we should liaise with
• Make suggestions for the agenda of the next TC, to be held in January or February 2017
Do feel free to submit additional topics of discussion for the upcoming TC and, please, do fill in the Doodle by
Friday.
In due course, you will receive the details on how to connect to the TC.
Kind regards,
Anthony Chang Edwin Morley-Fletcher
Yannis Ioannidis
--
Ludovica Durst, Ph. D.
***@***.***
Lynkeus S.r.l.
Via Livenza 6, 00198 Roma
Tel. +39 06 8440801
Fax +39 06 85344833
--
Full post:
https://www.rd-alliance.org/group/health-data/post/health-data-ig-tc-doodle
Manage my subscriptions: https://www.rd-alliance.org/mailinglist
Stop emails for this post:
https://www.rd-alliance.org/mailinglist/unsubscribe/54660
The materials in this message are private and may contain Protected Healthcare Information or other information of a
sensitive nature. If you are not the intended recipient, be advised that any unauthorized use, disclosure, copying or
the taking of any action in reliance on the contents of this information is strictly prohibited. If you have received
this email in error, please immediately notify the sender via telephone or return mail.
The materials in this message are private and may contain Protected Healthcare Information or other information of a
sensitive nature. If you are not the intended recipient, be advised that any unauthorized use, disclosure, copying or
the taking of any action in reliance on the contents of this information is strictly prohibited. If you have received
this email in error, please immediately notify the sender via telephone or return mail.
--
PD Dr. rer. nat. habil. Joerg Geiger (Dipl. chem.)
ibdw - Interdisciplinary Bank of Biomaterials and Data
Straubmuehlweg 2a/Bldg A9
97078 Wuerzburg
Germany
Tel +49 (0)931 201 47 010
Fax +49 (0)931 201 6 47 000
Email ***@***.***-wuerzburg.de