What is the ACT Network?
The ACT Program is an NIH-funded program that invites CTSA hubs to share patient data via a web-based application (SHRINE). Participating CTSA hubs each contribute a locally managed SHRINE node to the "network". Researchers here at USC are invited to access the ACT Network via our locally managed node. For more information on the ACT Program, please visit www.actnetwork.us/national.
What kind of information is available through ACT?
The ACT Network discloses the patient count at each participating CTSA hub in response to a researcher's query into how many patients share various characteristics: diagnoses, procedures, labs, and/or medications. The patient counts can be filtered by patient demographics such as age, race, and gender. Patient counts can also be broken down by patient age, race, gender, and vital status.
In Phase II of the ACT Program (tentatively scheduled for 2020), researchers may be given tools to identify patient cohorts for clinical trials at the participating institutions. Currently, only patient counts are available to researchers, not patient lists.
SC CTSI also provides a tool called "i2b2" to allow researchers to request data on a set of patients, for instance, to identify potential patients for clinical trials. For more information on i2b2 and identifying a patient cohort from Keck Medicine, search this wiki for "i2b2".
Other participating institutions in the ACT Network may also be able to provide data on sets of their patients. In order to identify a patient cohort at a different institution, you would need to identify a research collaborator at that institution who will facilitate your access to those patients.
What is the source of the ACT Network data?
For our "Keck Medicine of USC" node, the data originate from our Cerner (Keck Care) data bases. Other participating CTSA Hubs provide their own patient counts from their own electronic health records.
Who can access the ACT Network?
All investigators and research staff that currently use the USC IRB and have current certifications in Human Subjects and HIPAA may request access. To request access, please fill in this form: ACT Network Access Request for USC Researchers. You will receive an email confirmation of your account request within 2 business days.
What is my account Username?
Please use your USC NetID (username) and USC Password, as you would for single sign-on applications. Your credentials will work for both the SHRINE Data Steward and the SHRINE Webclient.
Where is the web application?
Please visit our "landing" page here: https://act.med.usc.edu/. Prior to running any queries, please create a Query Topic in the SHRINE Data Steward application. To run queries, please visit the SHRINE Webclient application.
Which browsers are supported?
The SHRINE web applications are tested by their developers only on Firefox and Chrome. Other browsers such as Safari, Internet Explorer, and Edge are not guaranteed to work.
What are my obligations as an ACT user?
Every time a user logs in to the system, they will be asked to agree to the ACT Network Terms of Query Access. All users are expected to adhere to the Keck Data Usage Policy regarding specially protected data. You may download the text of the Terms of Query Access.
Do they have a FAQ page?
Yes. Please see the ACT Network FAQ page here: ACT Network FAQs at National Site
I clicked on a web application button on the landing page, but nothing happened. Why not?
To access our web applications, you need to be on a secure USC network or Keck network. The table on the landing page indicates which networks we support. USC VPN and Keck VPN are also supported.
How do I use the SHRINE Data Steward web app to manage my query topics?
Please see this documentation, provided by the SHRINE team at Harvard Catalyst: SHRINE-Data-Steward-Help.pdf
How do I use the SHRINE Webclient web app to conduct my research queries?
Please see this documentation, provided by the SHRINE team at Harvard Catalyst: shrine-client-guide.pdf
How long does it take to retrieve patient counts from ACT Network sites?
Results are typically returned in under two minutes, depending on the complexity of the query. You are welcome to leave the web application at any time. The SHRINE system will continue to collect data from the ACT Network "in the background." When you log in again to the SHRINE Webclient, you can click on a Previous Query to review all the results from the network. A bolded entry in the list of Previous Queries indicates that updated results are available since you last viewed that query.
My results are not what I expect. Why?
During the pilot phases of the study we are seeking help from users to identify and resolve inaccuracies and improve the system. Unexpected results may be due to the data capture process in the originating information systems or data processing intended to clean and de-identify data. Please help us improve by reporting specific inaccuracies to cri@usc.edu.
How is patient privacy protected?
Patient privacy is protected in accordance with Federal, State, and USC Policy. Only de-identified data is available directly through the SHRINE webclient. Identifiable data can be requested with an i2b2 Clinical Data Request, and is available after IRB approval.