The following provides guidance on maintaining participant anonymity and ensuring long-term confidentiality of information.

Using “Pseudo‐Codes” to Ensure Anonymity

In study designs in which data collection is accomplished strictly through repeated paper or internet
surveying or testing (but not interviewing), it may be possible to anonymously collect and link data from
various data collection instruments and/or over a multiple data collection events during an extended
time period without the use of a code list that links responses to participants’ identities. This can be
accomplished by instructing the participant to create his/her own “pseudo‐code,” a code that can be
accurately recreated each time the participant completes a different questionnaire/test. The pseudo‐
code is created by instructing the participant to answer questions that he/she is likely to answer the
same way each time he/she is asked. For example, questions may include:

  • What is the second letter of your mother’s maiden name?
  • What is the fourth digit of your social security number?
  • What is the last letter of the name of the state in which you were born?
  • What is the last digit of your home telephone number?
  • What is the second letter of the month in which you were born?

In this example, Maggie Jean Smith, who was born in Delaware in March 1983, whose mother’s maiden
name is Markham, whose Social Security Number is 999‐22‐6512, and whose home telephone is 555‐
5555, would consistently create a “pseudo‐code” of A2E5A.

At least five questions are recommended, and more can be added if the participant population is large
and duplication is a concern. If data will be collected over an extended period of time and there is
concern that the participant may not be able to recall the pseudo‐code at each data collection point,
he/she may be given the option of writing his/her code on a piece of paper, sealing it in an envelope,
writing his/her name on the envelope, and giving the sealed envelope to the researcher for safe‐
keeping. The paper on which the participant writes his/her name should include a statement explaining
that the researcher kill keep, but not open, the envelope; that the participant may open his/her
envelope at a later date if he/she forgets his/her code, and that anonymity cannot be guaranteed if the
envelope has been opened by anyone other than the participant.

Providing participant anonymity by using pseudo‐codes is preferred over methods that identify the
participant with his/her data if the use of pseudo‐code rubric does not affect the quality of the research.

Maintaining Long‐Term Confidentiality of Information When Code Lists are Used

Traditionally, researchers have used code lists to link data collected over a period of time and/or
through use of different instruments. These code lists normally assign a number to a participant’s name
and the code number is used during data collection and recording. Often, it is possible to destroy these
code lists after all data are collected, transcribed, and/or entered in a database without affecting the
quality of the research. Although a study using this type of coding cannot be considered anonymous
because, at least at one point in time, the researcher is able to link data to identity, destruction of the
code list after data collection and linking is complete does offer future confidentiality protections to
participants. Destruction of the code list de‐identifies the data for anyone else who may have access to
the data in the future. This practice also allows the researcher to maintain raw data for an extended
period without the risk of compromising participant confidentiality.

Destruction of code lists that associate research data with participant identity after data collection,
transcription, and/or database entry are complete is the preferred method of maintaining
confidentiality in the long‐term, providing that de‐identification of the data does not negatively affect
the quality of the research.