The confidentiality of records is a matter of primary concern to the NCHS. To elicit health information from the American people and from the health care providers through our surveys, the NCHS must be able to assure them that this information will be protected from all unauthorized persons. This means that NCHS must have strong laws to protect these records, and must establish and follow established procedures. This manual outlines the NCHS’s policies that implement federal law and ensure that all confidential information will be fully protected. It should be viewed in unison with the NCHS data release policies addressing access to data and NCHS Research Ethics Review Board Requirements.
Ethical issues
When collecting data from individuals, facilities, or establishments, statistical agencies and other data producers usually give respondents assurances that the information they provide will be used only for statistical purposes. This is an ethical and legal obligation.
To be successful, “NSOs must maintain the trust of respondents if they are to continue to cooperate in their data collections. Confidentiality protection is the key element of that trust. If respondents believe or perceive that a NSO will not protect the confidentiality of their data, they are less likely to cooperate or provide accurate data. One incident, particularly if it receives strong media attention, could have a significant impact on respondent cooperation and therefore on the quality of official statistics. This is the dominant issue from the point of view of NSOs but there are other concerns. A key one is whether they have sufficient authority to support researcher access to microdata, either through a legal mandate or some other form of authorization.” (UNECE, Conference of European Statisticians 2007. “Managing Statistical Confidentiality and Microdata Access: Principles and Guidelines of Good Practice.”)
To maximize microdata use, NSOs and other data providers need to balance the need for confidentiality with provision for access. This may be achieved by using different types of microdata, as previously discussed. Another option, although of limited applicability, is to obtain formal consent to share the collected data from each respondent.
Obtaining consent from individuals
“Consent may be obtained by means of a signature or by construction. In the first instance, the respondent may be provided with a written description of the intended treatment of information he/she is asked to provide and asked to sign his/her name, thereby indicating permission to use that information as described. In some cases, however, he/she is given this information either in writing or verbally. If the respondent then supplies the requested data, [the investigator] ‘construes’ that the respondent agrees to those intended uses and sharing of data with parties he has read or been told about. The [investigator] can then make such uses of the data as have been described to the respondent, but no other uses of the data may be made.” [*]
Obtaining consent from an establishment
“In the case of establishments, the approach depends partly upon whether the request for information is made in a personal interview or by mail.
A. If the request for information is made in person by a staff member or agent of [the investigator], the contact person first inquires as to who is authorized to provide the requested data on behalf of the establishment. When such authorized person is informed of the uses to be made of the data, and he/she then supplies the data, [the investigator agency’s] staff construes that the establishment has given consent to the uses of data as specified.
B. When data are sought from an establishment by mail, the request may be addressed to the establishment itself, to the manager of the establishment, or to some other person who, as [the investigating agency] has previously ascertained, is authorized to provide requested data on behalf of the establishment. The letter transmitting the request explains the uses to be made of the data. When [the investigating agency] staff then receives the requested data from the establishment, it is construed that the establishment has consented to those uses of which it has been informed.” [*]
[*] Source: National Center for Health Statistics - Staff Manual on Confidentiality (2004)”