Quote participants accurately
Once you have completed your activity, you may wish to use the information participants provided in quotations. Use participants’ exact words and respect how they are identified. Make sure to maintain the level of identification participants have consented to. Follow the Australian privacy principles.
What to do when quoting participants
You may want to include what participants have told you through direct and indirect quotes.
Stay true to the quote
When quoting participants, ensure you maintain the original intent of the quotes.
You may be quoting people directly or indirectly. Where you paraphrase, use the participant’s language without censoring or correcting the quotations to ensure you are not being patronising or changing the connotation.
Example
In the discovery phase of a design project, an interview participant describes themselves using a slur. The interviewer asks them why they use this term, and the participant explains they often feel othered and disrespected. The participant uses this term to emphasise the nature of their experience.
When reviewing all submissions, another researcher suggests changing the quotation to remove the slur. The interviewer considers the word is derogatory but recalls the participant used the slur to emphasise the ableist attitudes they experience. The interviewer confirms the participant’s preference. The participant decides that as the report will not mention their name, they are comfortable for the interviewer to use their exact words. The interviewer includes the quote uncensored in their internal report.
Respect identity preferences
Many people with disability have strong preferences for how they like to be referred to. Keep this in mind if quoting how people refer to their disability identity. Use the terms the participant uses.
For example, if a participant refers to themselves as “wheelchair-bound” or “disabled” in a quote, do not change the description to “a wheelchair user” or “a person with disability”, as that is not the participant’s preferred term.
If you are unsure of someone’s preferred language, only include the information they have given consent for you to share, such as their name or organisation.
Read more about different models of disability and language preferences.
Relevant pages
Context: Understand what disability means
How to identify people when quoting them
Before identifying the people who provided quotes, make sure you have:
- clearly communicated the options for redaction or confidentiality and how you manage retribution and defamation
- communicated the level of identification either explicitly (such as through a consent form) or tacitly (such as saying that quotes will be attributed to a specific level of identification as part of your housekeeping statement).
When you quote people with disability, you should:
- Be aware that participants with disability may be more vulnerable to being identified based on a few identifying factors.
- Maintain the level of identification stated in any ethics, consent, and privacy documentation or to participants in any communication before and during your engagement.
- Be mindful of the level of identification your participant(s) may have agreed to.
- Consider redaction if information might be identifying beyond what participants have agreed to or if content may raise concerns about defamation or retribution.
Relevant pages
Design: Follow ethical standards
Plan: Give participants clear information in advance
Deliver: Deliver an inclusive activity
Australian privacy principles (Office of the Australian Information Commissioner [OAIC])
Guide to data analytics and the Australian Privacy Principles (OAIC)
Levels of identification
There are four levels of identity you can give participants when quoting them.
Identified
Quotations are attributed to participants by name or other individual identifying information, such as an identification number or username.
De-identified
Personal information and direct identifiers like name, age and organisation have been eliminated, but other identifying data may be kept, such as location and medical diagnosis.
Using a pseudonym/alias
Participants’ identities are hidden, but their data is still connected to a unique identifier like a number or false name. You have assigned the pseudonym or asked the participant for an alias to use. You or your team hold the key to reverse or expose the data.
This is not the same as identifying a participant by a pseudonym or alias that identifies them elsewhere, such as a username or phone number.
Anonymous
There is no information given about the person being quoted.
Example
A report is published covering the experience of LGBTQ+ people in the disability community, with a section on wheelchair users. A quote from Wheelchair User X is attributed to someone located in a regional town in Western Australia.
Because the number of people who belong to the demographic of LGBTQ+ wheelchair users in that region of Western Australia is relatively small, people in their local community were able to identify the participant based on the content of the quote.
If the quote contained sensitive information, Wheelchair User X may experience negative impacts from being identified.
Relevant pages
A visual guide to data de-identification (Future of Privacy Forum)
5 Principles of Data Ethics for Businesses (Harvard Business School Online)
Privacy in the Australian Public Service (OAIC)
When participants request attribution
Some participants, especially those representing an organisation, will want to be credited for their participation. How they are credited should be discussed with the participant before their contributions are included in any reports or other output. Make sure your ethics approval allows this.