Why DPUP has a Transparency and Choice Guideline
Help people understand why and how providing personal information can help them or people in similar circumstances, if providing some information is optional, and their rights to access or request changes.
Transparency and Choice’s intent
The Data Protection and Use Policy (DPUP) Transparency and Choice Guideline helps agencies make it easier for service users to understand and, where possible, have choices about when and how their information is collected and used.
Having this understanding and choice improves people’s trust in agencies collecting and using their information. The steps described in this Guideline also help to ensure that information is accurate and relevant for its intended purpose.
Service delivery organisations collecting personal information, and service users themselves, stress the approach must be open and honest. Clear guidance in this area helps agencies that collect and use people’s information to:
- find ways, where possible, to give people choices about what information is collected and how it’s used, while still enabling the purpose to be achieved
- avoid using the language of consent if it suggests people have a choice when they may not, or if their only real choice is between using or not using a service they need
- be transparent and ensure understanding about what information is collected, why and how it may be used
- explain what happens to information if and when it is used beyond frontline assessment or service delivery.
Transparency and Choice’s key concepts
This Guideline describes an approach that focuses on transparency and openness as the foundation of improved trust.
It describes collaborative responsibilities for agencies to ensure that service users can understand what happens with their information in a way that makes sense to them and their circumstances. This includes opportunities to further develop that understanding over time.
The Guideline also outlines how this might be done in a manner that respects people’s mana.
Important reasons for this Guideline
- People who use agency services want a good understanding of why their information is needed. When they’re unclear about it, this can cause anxiety, especially if their current situation is already a difficult one.
- When seeking support, service users who are in crisis may not be able to fully understand what is happening with their information. They may express an interest later.
- Service providers and service users are clear that it’s important people know what information is held about them, have a say about how it’s used and who gets to see it, and are confident the information is accurate.
- Frontline professionals are clear that explaining how you use people’s information, or gain their consent to use it, directly influences building relationships of trust.
- Service users sometimes express concern that their information could be used against them or their whānau without their knowledge. For example, if it is disclosed to other agencies who may judge them or make a decision that negatively impacts them.
- Service users understand the potential value their information has to enable better outcomes for people in similar circumstances. They want to be confident their information will be valued, protected, respected and used in accordance with that potential.
- An individual’s circumstance is important in ensuring understanding and choice. For example, age, culture, language and literacy must be considered, as well as any other circumstance that is relevant to respecting mana and enabling understanding of their choices.
It's also important to remember the context of particular people and communities.
- Māori providers and other Māori / iwi groups want te ao Māori considered when Māori communities are a key focus.
- Pacific peoples are looking for clear and simple explanations in language they understand about why their personal information is being collected and how it will be used. They are also looking for greater accountability to families and communities on how their data is used.
- Disabled people also highlight the need for clear and accessible information about what information is being collected, and for what purpose. Disabled people want a greater understanding of people’s situations when asking for identification information. For example, some disabled people do not have a driver licence.
Using the language of choice
This Guideline uses the language of ‘choice’ rather than ‘consent’.
- Consent is given when a person voluntarily agrees to something based on a good understanding of the consequences.
- Choice gives people control, whenever possible, over what information they decide to provide.
Agencies often use the language of consent, but without common agreement about what it means. Consent can have specific definitions in fields such as medicine, research and law. It is often used in circumstances where people who want to access an agency will not receive the help they need if they don’t provide the information requested.
For this reason, DPUP uses a plainer word — choice — and focuses, in part, on the processes that help give people choices and allow them to act on those choices.
This language also reflects the fact that the Privacy Act 2020 is not consent-based privacy legislation.