Why a Guideline on Transparency and Choice?
People who use social 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.
This Guideline recognises a range of factors.
- Service users who are in crisis may not, when seeking support, have a clear wish or be able to fully understand what is happening with their information, but will often express an interest at a later date.
- Service providers and service users emphasise the importance of people knowing what information is held about them, having a say about how it’s used and who gets to see it, and having confidence that information held about them is accurate.
- Frontline professionals emphasise that how you explain your uses of people’s information or gain their consent to using it, directly influences building relationships of trust.
- Service users sometimes express concern that their information will be used against them or their whānau without their knowledge, for example by being disclosed to other agencies who may judge them or make a decision that negatively impacts them.
- Service users are aware of the potential value of their information to enable better outcomes for people in similar circumstances and want to be confident their information will be valued, protected, respected, and used in accordance with that potential.
- The context of the individual is important in ensuring understanding and choice. For example, age, cultural, language and literacy must be considered, and any other circumstance of the individual that is relevant to respecting mana and enabling understanding of their choices.
- 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 for people about why their personal information is being collected and how it will be used, and greater accountability to families and communities on how their data is used.
- Disabled people also highlight the need for clear information about what information is being collected, for what purpose and a greater understanding of people’s situations when asking for identification information (e.g. some disabled people do not have a driver’s licence).
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. The language of 'consent' is often used in the sector, but without common agreement about what it means (it can have specific definitions in fields such as medicine, research and law) and often in circumstances where people who want to access a social service won't receive the help they need if they don't provide the information requested. For this reason, this Policy uses a plainer word – 'choice' – and focuses (in part) on the processes that help give people choices and enable them to act on those choices. This language also reflects the fact that, for the most part, the Privacy Act is not consent-based privacy legislation.
Intent of the Guideline
This Guideline helps agencies facilitate service users' understanding of and, where feasible, having 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 that the approach must be one of openness and honesty. Clear guidance in this area helps service delivery organisations that collect and use people’s information to:
- find ways, where feasible, to identify and give people choices as to what information is collected and how it’s used, while still enabling the purpose of collection to be achieved
- avoid using the language of consent that may suggest that people have choices in situations where, for all practical purposes, sometimes they don’t or their only real choice is to not use a service that 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.
The key concept in this Guideline
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 are able to understand in a way that makes sense to them and their context, including 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.
When to use the Transparency and Choice Guideline
When deciding how to inform people about the collection and use of their information and giving them choice.
Use this Guideline when deciding how to help service users understand why their information is needed, how it will be used, and what rights and choices they have.
The Guideline applies to agencies (including NGOs and other service delivery organisations) collecting information directly from service users, as well as to agencies collecting through other agencies and organisations.
This Guideline is mostly about people’s understanding and rights in relation to their personal information. However, people often think of information they have supplied, or that is about them, as personal, even when it has been de-identified or anonymised and is being used in a non-personal form. For this reason the Guideline recommends actions relating to the use of this type of information as well. The relevant sections of the Guideline make it clear when those additional recommended actions are not required by the Privacy Act.
Transparency and Choice's relationship with the other Guidelines
Elements of this Guideline inform the three other Guidelines as follows:
Explains how the concept of ‘purpose’ is fundamental to making good and lawful decisions that underpin understanding and trust. It describes considerations that help agencies to formulate purposes of collection and check them against potential adverse consequences that might suggest a given collection, while lawful, is not desirable. It also identifies circumstances where a purpose of collection may be able to be approached in a way that gives service users a choice as to whether to provide personal information and, if so, how much.
Describes ways to enable people to understand and exercise their rights to access and request correction of their personal information.
Sets an expectation that when information is collected to improve outcomes, service users can be given examples of where and how this will occur or has occurred.
Using the Policy Principles with the Transparency and Choice Guideline
Because this Guideline flows directly from the Policy Principles, it's useful to read it with those Principles in mind. They can help to identify considerations relevant to providing people with choices where possible and helping them to understand what happens with their information.
Initial considerations include:
Will service users understand that providing their information is either useful or necessary to help them, or may help people in similar circumstances?
What actions can be taken to uphold people’s mana by involving them in defining useful steps to take to improve understanding of their choices?
How can people be empowered to make decisions by knowing what their choices are and the value of those choices?
As kaitiaki or stewards of people’s personal information, how can you keep track of, and communicate, the range of uses of the information in your care, and the improved outcomes enabled by it?
How can agencies work together, for example funders and service providers, to improve transparency and provide clear information about and support for choices, for all those involved?