Data Centers and Surveillance

The World Trade Center (WTC) Health Program provides members with WTC-related medical monitoring, diagnostics, and treatment. To deliver on this mission, the Program works with Data Centers to track information about our membership and funds and conducts research into WTC-related physical and mental health conditions, their treatment, and emerging health conditions. Members can support 9/11 research by consenting to share their health information with health researchers and Data Centers.

General Data Tracking

To help the Program deliver the covered benefits and care to eligible members, certain administrative and membership information is tracked. The Program works with Data Centers that collect, analyze, and study data such as:

• Types of medical and pharmacy billing claims submitted,
• Numbers of members with various types of certified WTC-related health conditions,
• Mortality rates,
• Symptoms among members,
• Medical conditions not covered by the Program,
• Treatment and medications received by members, and
• Trends over time of all the above items.

This data helps the Program to:

• Assess whether members are receiving health care that is high quality, effective and timely,
• Identify possible gaps in the availability of certain health care services, and
• Predict future funding needs for the Program.

This type of data tracking is considered part of normal Program operations and does not require member consent. This data is used to help manage and improve the Program, such as tracking how Program-provided services are used. This helps the Program ensure that members are receiving their Program benefits and quality health care.

Data Sharing Consent

Members can choose to provide consent for additional and more detailed health data to be shared in 9/11 health research. For example, unless a member provides their consent, a member’s information is not shared with external researchers. 9/11 health research helps find ways to improve diagnosis and treatment of WTC-related conditions. It also helps find new potential health conditions related to 9/11 exposures.

Consent is optional and any information collected is maintained in accordance with strict requirements for privacy and confidentiality. Members will continue to receive their Program benefits and treatment(s), even if they do not agree to share medical information for research purposes.

Members can consent to:

• Allow their data to be used in linkage studies, such as linkages with health registries,
• Allow their contact information to be shared with external researchers, so they can be contacted about participating in future research studies.

If a member declines to provide research consent, they will continue to have full access to their covered medical care and benefits from the Program, and their membership status will not be affected. Members can withdraw their consent at any time and withdrawing consent will not affect the member’s Program benefits or membership status.

Learn more about WTC Health Program Research.