Expanded Access to Netcare for Research
The Alberta Netcare Portal (Netcare) is a viewer of health information provided from many source systems across the province. It is a powerful clinical tool and increasingly investigators are requesting access to this information for research purposes.
As a custodian of Netcare, Alberta Health Services (AHS) is bound by the Information Exchange Protocol (IEP) (2007) when providing access for research personnel. Because ANP was developed primarily as a clinical tool, the rules around access for research are currently quite limiting.
Revisions to these rules are expected to be tabled in the next session of the Alberta Legislature at which time we will have an opportunity as a collective community of investigators and research administrators to review and comment on how well the changes respond to our evolving research environment.
In the meantime, AHS Research Administration has collected specific examples of research activities that are consistent with the intent of the IEP but under the existing interpretation could not acquire data directly from Netcare.
The AHS Chief Privacy Officer, Mike Tolfree, has reviewed the AHS obligation under the IEP in light of these examples and has offered an expanded interpretation of the IEP that permits AHS to offer better (albeit not ideal) access for researchers while we await the changes in legislation.
Thanks to Drs. Lawrence Richer, Richard Fedorak and Michael Hill who gathered comments from the research communities at the Universities of Alberta and Calgary to inform the drafting of these materials.
The new criteria for access and process for obtaining access are available at: http://www.albertahealthservices.ca/8594.asp
To see AHS memo on Accessing Information from the Alberta Netcare Portal (ANP) for Research Purposes click here.