Charter Review
Interest Group Title: Health Data IG [Charter] [Revised Charter]
Proposers: Yannis Ioannidis, yannis@athena-innovation.gr
Date Received by TAB: Feb 18, 2016
Date Review Completed: July 3
TAB Reviewers: Ingrid Dillo and Francoise Genova
Summary:
Note: the group addressed all concerns and the revised charter was accepted and sent to Council to be Recognized and Endorsed.
<Note: summary statement> TAB recommends that the IG charter be conditionally approved subject to the following change to the IG charter:
This is a very important topic to be tackled by the RDA, and the proposers deserve credit for their initiative to start a group and build participation, partnership and content. Because of the global nature of the RDA, more participants from other regions than Europe, and at least one non-European co-chair, should be identified (with in mind the critical importance of gathering participants with clinical expertise) before a formal agreement is given to the Group. Many organisations tackle the wide subject of Health data. It would be useful to discuss the Group relationship with these organisations and to include liaison with them among the Group objectives. The Group has among its first objectives to identify topics to be tackled in priority. It would be extremely useful, and it would help the Group to make progress at good pace, if one or two of these topics coud be identified now. Since the identification of its priorities during its first year of existence is a key objective of the Group, this is a strong recommendation but not a condition for approval. Such priority area's/topics could lead to the birth of one or two working groups with a very specific scope and limited timespan under the umbrella of the overarching IG.
<Note: capture in this section a summary of TAB interaction with IG proposers so that we have record of the interaction.>
Focus and Fit:
(Are the Interest Group objectives aligned with the RDA mission ? Is the scope too large for effective progress, too small for an RDA effort, or not appropriate for the RDA? Overall, is this a worthwhile effort for the RDA to take on? Is this an effort that adds value over and above what is currently being done within the community?)
The Health Data domain is currently a gap in RDA topic coverage, although is it an essential domain in the data world, both by the societal implications of health and because of its specific requirements, in particular about privacy and security. As stated by the proposers, several professions and research disciplines are involved.
At present, the 'initial focus' proposed for the Group includes many topics, and it is essential that a real focus is defined on a few priorities on which a sufficient critical mass of interested participants is identified.
The case statement explains that the Group builds on extensive expertise gained in several projects. The added value of an RDA Group is in particular the liaison with other relevant Groups, in particular the Privacy Implications and the Data Security and Trust Working Groups. Members of these WGs participated in the Tokyo Health BoF and expressed interest. Liaison seems thus to be establised.
Capacity:
(Does the initial membership list include sufficient expertise, and disciplinary and international representation? Are the people involved in the Interest Group sufficient to make tangible progress? What individuals or organizations are missing?)
The initial membership involves people with different expertise, in particular people who likely have clinical expertise from hospitals and clinics. The membership should clearly be extended in that direction, since this is where the requirements will come from, as well as the evaluation of the relevance and applicability of the proposed outputs. It also includes a member of the Italian National Bioethic Committee, another key profile for the Group.
It is likely that the current membership will not be sufficient to tackle the wide range of subjects listed in the case statement, and again it is important that the Group establishes its priority topics quickly. See below the comments on international participation.
Impact and Engagement:
(Is it likely that the Interest Group will engage the intended community? Is there evidence that the research community wants this? Will the outcome(s) of the Interest Group foster data sharing and/or exchange?)
The Group membership is currently heavily dominated by participants from Europe, with only one from the USA and none from the other parts of the world. The Group held two BoFs in successive RDA Plenaries (Paris and Tokyo). There is genuine interest in participation. Participants from other regions than Europe, and at least a non-European co-chair, should be identified before a formal agreement is given to the Group. It would be extremely useful at the same time to begin to identify one or two priority topics on which work could readily start.
In addition, many organisations tackle the wide subject of Health data. It would be useful to discuss the Group relationship with these organisations and to include liaison with them among the Group objectives.
Recommendation:
Charter is Sufficient __; Charter Requires Revision x; Charter is Rejected __
Comments:
This is a very important topic to be tackled by the RDA, and the proposers deserve credit for their initiative to start a group and build participation, partnership and content. Because of the global nature of the RDA, more participants from other regions than Europe, and at least one non-European co-chair, should be identified (with in mind the critical importnatce of gathering participants with clinical expertise) before a formal agreement is given to the Group. Many organisations tackle the wide subject of Health data. It would be useful to discuss the Group relationship with these organisations and to include liason with them among the Group objectives.The Group has among its first objectives to identify topics to be tackled in priority. It would be extremely useful, and it would help the Group to make progress at good pace, if one or two of these topics coud be identified now. Within this same context the group might also consider renaming the group with a less generic label.
<if conditional, state revisions … e.g., TAB recommends that the IG charter be conditionally approved subject to the following change to the IG charter:>
1. more members from non-European countries
2. appointment of a non-European co-chair
Next to that we have two strong recommendations:
1. To discuss liaison with relevant organisations
2. To define and prioritise one or two key issues/topics that the IG will tackle