Social Security death index
By using ThoughtCo, you accept our. This article describes our linkage process and demonstrates the effects of linkage with each data source on HIV prevalence numbers for NYC for the year Finally, we repeated these analyses within subpopulations of people with HIV, which can inform other disease registries on the utility of each database for certain groups. Field surveillance personnel review medical records to confirm reports and to collect data on sociodemographic characteristics.
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These are supplemented with reports from medical record review by field staff. Deaths occurring outside NYC must be ascertained by record linkages with other sources. Access to the NDI is made available to health researchers and disease registries solely for statistical purposes, with a fee charged per case per year searched to cover operating expenses, plus the annual cost of purchasing death records from all state vital records offices.
A routine search returns information on the state in which the death occurred, the date of death, the death certificate number, and the extent to which linkage variables e. The SSDMF contains the name, SSN, and dates of birth and death for all deaths reported to the SSA, often in connection with a claim for death benefits or termination of benefits the decedent received when alive. The state in which death occurred and cause of death are not available from the SSDMF, although the zip code of last residence is available.
A subscription to the database may be purchased for a flat fee; the version used for this analysis was purchased by CDC and provided to the DOHMH at no cost. Furthermore, we excluded any case in the HIV Surveillance Registry missing a first name, last name, or date of birth, because we required these identifiers for linkage to minimize the possibility of false matches. We selected this time period to include the earliest year in which the HIV Surveillance Registry had not been previously linked with the NDI , and the latest year in which both databases contained data available at the time of the linkage We conducted the linkages in the second half of , with differing procedures for each data source based on their unique requirements and contents.
Initial linkages of eligible cases to deaths in the NDI were generated by NCHS staff according to established procedures based on the following linkage variables: first name, last name, date of birth, SSN, gender, race, last known state of residence, and place of birth. Pairs matching exactly on all linkage variables were accepted immediately, along with those that matched exactly by first name, last name, date of birth, and SSN.
For the remaining potential match pairs, NCHS staff created probabilistic scores to prioritize those requiring additional review to be accepted as true matches. To minimize clerical review, we assumed that remaining pairs with a score below 28 were false matches. A third independent reviewer resolved any discordant decisions. To link eligible cases with the SSDMF, we used the following linkage variables: first name, last name, date of birth, and SSN, requiring at minimum the first three elements.
Cases matching exactly either by first name, last name, and date of birth—or by SSN only—were accepted after review of fields for any obvious discrepancies. As before, a third reviewer resolved any discordant decisions. We determined the number of deaths from through identified by either linkage source, and analyzed their distribution by state of death available from the NDI or state of residence from the SSDMF and by underlying cause of death from International Classification of Diseases, 10th Revision [ICD] codes in the NDI.
K is a measure of the proportion of agreement between two sources beyond that expected by chance, 22 with a K of 0. We performed statistical analyses using SAS software. To quantify the benefit of linking the HIV Surveillance Registry to national death databases beyond previous death ascertainment from other sources, we determined the percentage of all deaths in the Registry occurring from through ascertained by each data source: the NYC Vital Statistics Registry, routine medical record review, the NDI, and the SSDMF.
Finally, to assess the impact of using national death databases to improve the accuracy of reported HIV prevalence in NYC based on the HIV Surveillance Registry, we counted the total number of living HIV cases before and after the linkages, and calculated the percentage change in population prevalence. We based denominators for prevalence on U.
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Census data for NYC. This provided evidence that they were still alive after ; therefore, we excluded them from the linkage Figure 1.
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Of these, were exact matches and accepted as true matches without further review. Two staff members independently reviewed the remaining potential matches for 1, cases clerically; of these were accepted as true. Because of discordant match decisions, 9. In total, we accepted 1, matches 4. Of these, 1, were exact matches and accepted as true without further review, while 1, were inexact matches and reviewed by independent reviewers.
Discordant match decisions necessitated resolution by a third reviewer for 5. After review, inexact matches were accepted as true, resulting in a total of 1, matches 4.
Online Searchable Death Indexes for the USA
In total, we ascertained 1, people in the HIV Surveillance Registry as dead from one or both linkages, or 5. Among eligible cases, the percentage found to be dead Table 2 was notably greater among people diagnosed at older ages, current or former injection drug users, and people born in a U. Data on the place where death occurred were available for the 1, deaths found in the NDI. They revealed that only Another The three jurisdictions in which death occurred most commonly outside of New York State were New Jersey We found similar results based on the state of residence as found in the SSDMF, but with a greater percentage of deaths in which the place of residence was NYC Leading non-HIV-related causes of death included cardiovascular disease and substance abuse both 7.
When comparing the results of linkages with the NDI vs. Had the NDI linkage not been conducted, Additional deaths identified through linkages with the two national death databases resulted in a total of 14, deaths overall, with Independently, the NDI contributed an additional Had record linkages with the national databases not been conducted, deaths among certain subpopulations would have been disproportionately underascertained, including among white people by Retroactively applying results of the linkages with the national databases to the number of living HIV infection cases at the end of before linkage reduced the reported HIV population prevalence from 1.
The New Jersey Death Index
The magnitude of the decrease in prevalence was greater within certain subpopulations, including current or former injection drug users 3. After linkages with five years of mortality data from two national databases, we found 1, deaths of people reported in NYC with HIV infection not previously known to be dead, most of which occurred outside NYC. These linkages substantially improved the completeness of death ascertainment and, as a result, the accuracy of living case counts used to enumerate the HIV epidemic in the city and determine federal funding for HIV-related care and treatment services.
Each database had advantages and disadvantages beyond case yield that should be taken into consideration when deciding whether to use one or both databases. One factor is whether the disease registry needs to obtain the cause of death. NDI Plus data include underlying and multiple causes of death, which may provide valuable information on mortality trends for a particular condition, such as recent decreases in the proportion of deaths caused by HIV disease among people with AIDS. Another important consideration is cost.
This amount may make linkages between large registries and the NDI infeasible if sufficient resources are not available. Most of the newly found deaths occurred outside NYC, largely reflecting change of residence to outside the city after diagnosis.
Despite this, This was unexpected because routine linkages between the Surveillance Registry and the NYC Vital Statistics Registry had already been conducted before this analysis. Further examination revealed that at least 26 of the NYC deaths identified exclusively by the SSDMF had been flagged as possible matches in these prior linkages, but reviewers had not accepted them due to conservative match thresholds or discrepancies in identifiers.
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