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Component within OHDSI that would be an official research network


(Vojtech Huser) #1

It is always interesting to learn from other research networks similar to OHDSI on how things are organized. There is a tool to make the next step for OHDSI (e.g., Arachne) but I think there are much deeper reasons (for the participating network organization) for why this tool is not being adopted as fast as we may want.

TQA (= Terms of query access) is an interesting document that the NCATS funded CSTA network (called ACT) has here:

https://www.actnetwork.us/national/act-network-governance-and-regulatory-information-46EU-1431JJ.html

Interesting parts are for example

I further acknowledge the additional level of ethical sensitivity inherent in accessing data from
institutions and patients other than my employing institution and agree to exercise exemplary
ethical conduct when so doing. This includes but is not limited to the following specific issues:
o I agree to restrict requested query topics and associated individual queries to bona fide
research issues.
o I will not formulate queries that could be used for competitive institutional or individual
advantage.
o I agree not to attempt to identify any individual or set of patients contained in the
aggregate data.

or

I understand that any violation of this agreement will subject me to disciplinary action by my
institution in consultation with the appropriate office.

I think Arachne should inspire from this. Or maybe we should create www.ohdsi.org/network and have competing multiple “Arachne” there listed and work on some common legal and other framework how formal network would work from non-technical perspective.


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