National Death Index: Monitoring the Slippery Slope

1. National Death Index: Monitoring the Slippery Slope Lou Saadi, Ph.D. Kansas NAPHSIS Annual Meeting, 2007 Salt Lake City, Utah

2. NAPHSIS membership represented on the NDI advisory committee • Alvin Onaka, Hawaii • Bob Hayman, Maryland • Richard Genovese, New York City • Lou Saadi, Kansas • Other members of the advisory committee include those conducting research from the private sector, public health, other government and universities.

3. We all Participate in NDI via contract • States provide identifiable death information to the NDI for research purposes only (no administrative, legal or other non-statistical uses). • There is a rigorous application process to obtain data from NDI and fees apply. • Many researchers wish to discover whether a person in a cohort they are studying has died only and they provide names to the NDI (Routine NDI request). Others also wish to capture the cause of death and may or may not know the name of the decedent (NDI Plus). • Requests are made to NCHS staff for screening, processing and tracking. • Advisors are sent requests and once consensus is achieved, data are provided to the requester.

4. Examples of Research that benefit from NDI • Costs and consequences of gastrointestinal bleeding events • Diet and survival from ovarian cancer in Illinois Women • Epidemiology, infectivity and natural history of Hepatitis C virus infection in a blood donor population • Many worthy studies that will contribute to medical knowledge. However, our job is to assure the data are being used appropriately and within the criteria established by the advisors.

5. Recently strengthened criteria for NDI applications • Criteria hadn’t been officially changed since 1993. There was a concern that with new technologies and more educated users, criteria needed to be re-evaluated. • Registries were allowed to keep data indefinitely and without justification for continued maintenance of NDI data. • No evidence of IRB approval for research.

6. Recently strengthened criteria for NDI applications • Researchers have to indicate the when they will dispose of data. All fields related to NDI will be destroyed as well as linkage fields. • Exception: Registries are allowed to maintain data indefinitely as long as they provide justification as to why the data needs to be retained. Researchers can make the case for longer retention if justified.

7. Issues often addressed with applications • Determining whether the use of the data fit within the guidelines of non-administrative use and focusing on research and statistics. • Assuring all involved in the project are accounted for and proper signatories are in place. • Assuring the information provided “jives” with use and dispensation of the data.

8. States may be asked to provide paper copies of certificates • Depending on the state’s preference, a researcher may ask a state for a copy of the certificates needed to conduct followback or other uses. • Are states seeing many of these requests or are these diminishing since NDI Plus gives most researchers cause of death?

9. Other issues • Do states have any issues they wish to address regarding NDI issues? • Concerns? • Thank you