Protecting Privacy

Protecting privacy occurs throughout the lifecycle of the study, including recruitment, screening/consenting, data collection, and data dissemination.

Methods for protecting privacy at each of the major timepoints in a study are discussed below.

Privacy in Recruitment

Protecting privacy during recruitment might look like any of the following actions:

Verifying the identity of a prospective participant before discussing study details or personal information
Engaging in discreet recruiting, such as leaving unrevealing voicemails or using generic envelopes for sending letters, especially when recruiting for research on sensitive or stigmatizing subjects
Obtaining permission to mail materials to participants or asking permission to leave voicemails
Verifying participant contact information prior to sending materials via mail, email, or over the phone
Using generic signs on research rooms and spaces, particularly for research on stigmatizing or sensitive topics

Privacy in Screening/Consent

Protecting privacy during screening and consent activities might look like any of the following actions:

Conducting screening/consent activities in a private location (i.e.: in a private room, behind a barrier, using a white noise machine to cover conversations in semi-public areas, etc.)
Asking participants if they are comfortable answering questions/having a discussion in a given area; asking participants if they are comfortable having other people present (if any)
When conducting procedures remotely, ensuring the location of the study team member has adequate privacy so conversations will not be overheard, or data will not be seen by unauthorized individuals
Leaving/sending generic messages that avoid using study and participant identifiers, such as names, study titles, clinics, study topics, etc

Protecting Privacy in Data Collection

Protecting privacy during data collection might look like any of the following actions:

Conducting study activities in locations that maximize privacy (limited people passing by, closing doors, monitoring voice volume, etc.)
Discussing privacy with group activity participants (i.e.: a focus group) and the importance of not talking outside the group about what other people say during the group session
Allowing participants to use a pseudonym or limiting use of individuals’ names during a group activity
Asking everyone in a public group setting (e.g. classrooms, workshops) to turn something in (blank or filled) so participants do not have to self-identify when turning in materials
Collecting paper forms in a closed box or envelope rather than passing to others or leaving in an open area
Limiting participant identifiers that would be visible on paper documents (i.e. using study IDs instead of direct identifiers)
Advising the participant to move to a location where they are comfortable answering questions and will not be overheard
Offering a way to save and return later to an online activity if privacy is compromised
Offering other options of ways to respond to sensitive questions (i.e. pointing, clicking, or writing) if uncomfortable verbally responding
Utilizing privacy screens on computers when collecting electronic data in a public setting
Locking computers and workstations that grant access to participants' information when they are not in use, especially if the computer or workstation is in a public or semi-public area

Protecting Privacy in Data Dissemination

Protecting privacy in data dissemination means ensuring that data that is shared in publications, presentations, or data that is shared at the individual-level with other researchers, is not likely to be able to be used to re-identify specific individuals. Protecting privacy in data dissemination might look like any of the following activities:

Working only in locations where the study team can ensure privacy (not working in close proximity to non-study personnel, closing doors, closing/putting away documents/files before leaving, etc.)
Securing physical materials only in locations that ensure privacy (access limited to authorized study personnel)
Blurring/redacting/hiding faces and other identifiable features/marks (tattoos, scars, birthmarks, distinctive voice, etc.) in recordings or photos prior to disseminating or sharing
Only publishing or presenting aggregate results or findings (i.e. no individual-level information)
Ensuring identifying information is redacted from direct quotations when using qualitative data
Ensuring data cannot be combined together or combined with other available information in order to re-identify participants (managing indirect identifiers)
Either not presenting or combining/collapsing data from subject populations or sub-populations that have a small "n," especially when collecting demographic information or high levels of indirect identifiers