ACT Network FAQ's

Use this page to find answers to commonly-asked questions about the ACT Network.

ACCESS AND GENERAL INFORMATION

What is the ACT Network?

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 125 million patient records, and by 2020 will include ~90% of the CTSA consortium.

 

What does “ACT” stand for?

ACT is an acronym for Accrual to Clinical Trials.

What are the benefits of ACT? Why is it needed?

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.

 

Learn more about who can benefit from ACT >Learn more about using ACT throughout the clinical research cycle >

Who can use ACT?

ACT is available to all researchers at participating CTSA institutions. Researchers may also designate members of their research staff to access ACT on their behalf.

What institutions are currently part of the ACT Network?

 to see which institutions have joined ACT, and which institutions will join in future waves. Ultimately, ACT plans to include all institutions that are part of the NIH-funded Clinical and Translational Science Award (CTSA) program.


What kinds of data are available through the ACT Network?

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.

 

Click here to view the current ACT Network Ontology & Data Dictionary

USING ACT

How do I request access to ACT?

To request access to ACT, complete 
this form
 to send your request to your local institution for approval.

How do I get help accessing ACT (lost password, etc.)?

Contact your institution’s ACT Site Operations Coordinator (SOC). You can find this person’s contact information on your local ACT landing page.
Go to landing page >

Can I search directly through the text of medical records?

ACT uses a limited data set and does not currently index text from medical records. 


How long does it take to get results for an ACT query?

It depends on the size and complexity of your query, and on the responsiveness of local ACT sites. Currently, the ACT web client automatically times out requests that take longer than 3 minutes to return results. If your query is timing out, try reducing the number of variables, then adding them back incrementally. You can also set a custom timeout for a shorter duration to reduce wait times.


Why am I getting a message instead of a numerical result for an ACT query?

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.


How accurate/precise are ACT query results?


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.


Why does ACT report different results for my institution than our local EHR query tool?


The ACT Network relies on a common set of data coding practices, which are not identical with data coding practices at any specific site. Therefore, some detail is inevitably ‘lost in translation’ to the larger ACT Network. We recommend that you use ACT for big-picture queries, then use local EHR query tools to explore local patient cohorts more thoroughly.


How can I connect with a researcher at another ACT site for potential collaboration?

If you identify a site of interest for your trial and need help finding a potential co-PI, contact the institution’s CTSA Trial Innovation Network liaison for help. 


How do I get help structuring my queries or interpreting the results?

Contact your site’s ACT Data Steward. You can find this person’s contact information on your local ACT landing page (click Expand Local Key Contacts).

Go to landing page >

Can I use ACT to recruit patients for my trial?

In order to remain in compliance with local IRB procedures, all patient recruitment must occur locally, by local clinical investigators. ACT is currently developing and testing plug-ins to assist in local re-identification of eligible patients. 


Can I use ACT in my public health or health outcomes research?

ACT data are non-risk-adjusted, and public, comparative reporting of query results is not supported by the ACT data use agreement.

GOVERNANCE AND DATA SECURITY

How is data protected/HIPAA compliant?

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.

Learn more about institutional governance and regulatory topics

Is use of the ACT Network approved by my local IRB?


Yes. Part of the ACT implementation process at each site involves applying for approval from the site’s IRB.

Learn more about institutional governance and regulatory topics

How do I cite ACT in my grant or publication?

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.”