The data that most agencies collect is very sensitive. When gathering information about sexual behaviors, drug use, and HIV status, it is extremely important to protect the confidentiality of your clients. Everyone involved in the formative research process must be trained and alerted to issues of confidentiality, privacy and the right to refuse participation in research.

Use of identifying data  Data that personally identifies an individual, such as name and address, should NOT be collected unless an agency plans to conduct a follow-up survey, or if there is reason to contact that person at a later date for research purposes.

Discussion of data Staff should be respectful of privacy when discussing specific clients or respondents. At no time should a research subject be referred to by name during staff meetings or debriefings. For example, an outreach worker can say “one of my clients, a young gay Latino man, told me…” as opposed to saying “Oscar told me… .” This is especially important in smaller towns where privacy is more difficult to maintain.

Hiring outside staff Agencies may want to hire outside interviewers on a short-term basis to protect the confidentiality of their research subjects. Clients may not feel comfortable discussing their actual risk behaviors if the interviewer is also their case manager or prevention educator.

Storing and protecting data Once the research has been conducted and written up, all papers, cassette tapes, etc. should be kept under lock and key. This could simply be a filing cabinet or desk that locks, or a special locking box. Only select staff should have access to the data, such as interviewers, supervisors, staff who record or verify the data, and data analysts. Those who should not have access to the data are: other members of the research team, executive directors or agency board members.

Good Questions, Better Answers --  � 1998 California Department of Health Services and Northern California Grantmakers AIDS Task Force  -- http://www.goodquestions.com