ACT Website FAQ's

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ACCESS AND GENERAL INFORMATION

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What is the ACT Network?

The ACT Network is a nationwide collection of leading academic research institutions that share aggregate patient counts from electronic health record data. It contains over [XX] million patient records, and is estimated to add an additional [X]M patients per year as new research institutions join.

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.

Who can use ACT?

ACT is open access, and is available to all researchers at participating sites. Researchers may also designate members of their research staff to access ACT on their behalf.

What institutions are currently part of the ACT Network?

Click here
 to see which sites have joined ACT, and which sites are joining in future waves. Ultimately, ACT will include all 64 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/Billing Codes), lab results, and most frequently prescribed medications. Not all data points are available for all patients.

Can I search directly through the text of medical records?

No, ACT does not allow direct access to patient records.

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 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

USING ACT

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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.

What happens if a site is experiencing data connectivity problems?

If a particular ACT site is experiencing problems with data connectivity, then that site will appear in the Query Results with a status of [XXX]. 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).

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 at that institution, use the information on 
this page
 to contact the local [what to call this person?] for help. This information is also available within the ACT web client by clicking the Clinical Collaboration link in the right-hand sidebar. Once you’ve identified a collaborator, you can share your ACT query with that investigator through ACT. Your collaborator can then refine the query and search more thoroughly in their local electronic medical record to verify feasibility or begin recruiting patients (following their own local rules and policies).

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

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

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

Contact your site’s ACT [role description TBD]. You can find this person’s contact information on your local ACT landing page (click Expand Local Key Contacts).

Can I use ACT to recruit patients for my trial?

Not at this time. In order to remain in compliance with local IRB procedures, all patient recruitment must occur locally, by local clinical investigators.

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

The ACT Network can provide a helpful way to do preliminary exploration of participating sites. However, because data coding and availability vary across participating institutions, using ACT data as primary research data is not recommended.

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 appropriate CTSA Hub grant numbers from participating organizations. 


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.”

GOVERNANCE AND DATA SECURITY

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