The ACT Network is a nationwide federation of leading academic research institutions that share aggregate patient counts from electronic health record data. Its development is funded by the NIH through the National Center for Advancing Translational Sciences (NCATS) and the Clinical and Translational Science Award (CTSA) program. It contains over 40 million patient records, and by the end of 2018 will include ~60% of the CTSA consortium.
ACT is an acronym for Accrual to Clinical Trials.
ACT helps clinical investigators conduct cohort discovery before a trial starts, to establish feasibility of a clinical protocol for grant applications, IRB submission, etc. ACT also helps investigators identify additional sites for a clinical trial. By allowing investigators to thoroughly explore patient cohorts and potential sites before finalizing their clinical protocols, ACT increases the odds of successfully completing clinical trial recruitment.
The ACT Network queries the total numbers of patients at each participating site meeting your inclusion or exclusion criteria for demographics (age, gender, race, etc.), diagnoses (ICD9/10 codes), lab results, and most frequently prescribed medications. Not all data points are available for all patients.
There are several reasons for a non-numerical result:
“10 patients or fewer”: ACT will never return a number fewer than 10 to protect patient confidentiality. To increase the number of matching patients, you may try reducing the number of variables or expanding the criteria in your query.
“Results Not Available”: indicates that the results weren’t returned quickly (timed out) and your query is likely queued for processing. Results may be available minutes to hours later – to see if full results are available, look in your archived queries. You may also choose to reduce the number of variables to speed processing time.
Other error messages: indicate connectivity, data, or other technical issues at that site. Each ACT site runs data connectivity checks (and troubleshooting) daily, so it’s likely that trying your query again later will resolve the problem.
ACT provides an approximate count of the number of patients meeting the query criteria. Counts are intentionally approximate (+/-10 for each institution) in order to protect patient confidentiality. So, if you run the same query more than once, you will receive slightly different results each time. Identifiable patient data is never returned. If you would like to find out more about the obfuscation process please see "A Security Architecture for Query Tools used to Access Large Biomedical Databases" (Murphy, SN and Chueh, HC, Proc AMIA Symp. 2002:552-6).
The accuracy of query results also depends on the accuracy of data mapping at each institution; although the ACT Network uses uniform mapping processes, some variability across institutions may exist.
The ACT Network only shares aggregate patient counts, and never shares (or accesses) patient data. Each site monitors and reports on local usage of the ACT Network to ensure compliance with the ACT Data Use Agreement.
Yes. Part of the ACT implementation process at each site involves applying for approval from the site’s IRB.
Publications based on research using the ACT Network must cite the NCATS ACT grant: “This project was supported by the National Institutes of Health through grant UL1TR000005.” Publications should also cite the appropriate CTSA Hub grant numbers from participating institutions.
Any Intellectual Property derived from use of the ACT Network must cite the NCATS ACT grant: “This project was supported by the National Institutes of Health through grant UL1TR000005.”
Publications in which data source partners (hospitals) are to be identified by name will be reviewed for use of name only by each identified hospital prior to submission of a manuscript. At no time will specific participating data source partners be named unless explicitly approved by the data partner. Such approval must be requested and received in writing between the requestor and the Senior Vice President of Research, the Chief Information Officer, or their respective designee. Any entity (e.g., hospital) that does not agree to be identified by name as a data source will be instead identified as a “CTSA-affiliated hospital.”