The Department of Defense Trauma Registry is a web-based data collection tool that captures and documents, in electronic format, information about the demographics, injury-producing incident, diagnosis and treatment, and outcome of injuries sustained by U.S./Non-U.S. military and U.S./Non-U.S. civilian personnel in wartime and peacetime from the point of injury to final disposition. The DODTR supports U.S. military performance improvement initiatives with global collection and aggregation of casualty care epidemiology, treatments, and outcomes (JTS, n.d.; OSD, 2022).

The purpose of the AHI registry is to collect patient medical data related to reported health incidents for the purpose of analysis so that knowledge and characteristics of these incidents can be expanded for further advancements in the diagnosis, treatment, and outcomes of AHI-affected individuals (OSD, 2022).

Your decision to participate or to decline participation in the registry will have no impact on your medical care.

Yes, you have the right to consent, or withdraw consent, at any time.

We will not publish the names of individuals who choose to participate, nor will your participation be indicated to your home agency, unless your agency specifies that it is a requirement.

The data collected in the AHI Registry includes your name as it appears in your electronic medical record, your demographic information, the precipitating event (the narrative of what happened when you first experienced symptoms), a description of the symptoms, and any diagnosis or treatment, as well as outcomes of the AHI patient (OSD, 2022).

Your information/data will be stored on a secure server; privileged access to the AHI registry is restricted to Joint Trauma System personnel. The registry is housed within a DOD approved military system, which only grants access to those personnel who support the AHI registry within the Joint Trauma System.

Your information will be protected in the registry by a secured firewall with access requirements including restriction to a DOD network, registry account approved common access card certificates, and autonomous role-based password controls.

Patients are able to check the accuracy of their information through the electronic health record patient portal.

Your data/records are confidential to the extent permitted by law and only personnel on a need-to-know basis will have access to your personal identifying information. Unless a requesting Agency/organization has approval through the DHA Privacy and Civil Liberties Office, we will not share your data. If approved, a requestor would not see your PII or data elements that could point to or identify you; these data elements would be redacted, and your identifiers will be removed in all reports. All reasonable efforts will be made to keep the personal information private and confidential, but absolute confidentiality cannot be guaranteed. Data collected are used solely for analysis (OSD, 2022).

PII and personal health information can only be shared with researchers that receive an approved Data Sharing Agreement from DHA’s Privacy and Civil Liberties Office. A DSA is an administrative control used by DHA to document that the requested use of data is in compliance with all federal laws and DOD policies.

The DSA documents the responsibilities of the requestors, including the government sponsor and applicant/recipient. The DSA also confirms that DHA data will be used as permitted or required, and it exercises administrative, technical, and physical safeguards to protect the privacy of PHI, as required by the Health Insurance Portability and Accountability Act. The DSA determines the HIPAA-defined category of data intended for use (i.e., protected health information, a limited data set, or de-identified PHI). HIPAA permits a covered entity to use or disclose a limited data set for research, public health, or health care operations purposes. The DSA also maintains records to confirm compliance in case of an investigation.

Your information will be drawn from medical records and entered into the JTS DOD AHI registry. JTS personnel will collect information up to one year after your initial evaluation. Additional information beyond one year may be gathered by request.

Research data may be released with an approved DSA from DHA’s Privacy and Civil Liberties Office. However, your identifiers will be removed from reporting prior to sharing. De-identified data can also be released to other federal agencies through an approved Institutional Review Board (IRB) research protocol (OSD, 2022).

Any participating Department of Agency, to include the Department of Defense, has a Memorandum of Agreement with the Defense Health Agency. That MOA requests permission from the referring Agency to allow their employee to be included in the patient registry. The DHA will also request permission from the individual to include them in the patient registry as well.