DPUP — summary for frontline workers
When you work directly with service users, whānau or communities, you are a kaitiaki. This brings an obligation to care for the data and information they share, and uphold the Manaakitanga Principle. You can be an advocate for the respectful, trusted and transparent use of their data or information. This summary outlines important things to think about when you collect or use service users’ data or information.
When DPUP talks about data and information, it can mean all sorts of things. For example, someone’s phone number, an assessment record or an Excel spreadsheet that shows the age, gender and length of time people were involved with a service. It’s any data or information from or about service users, their whānau or communities.munities.
The Principles are values and behaviours that underpin respectful, transparent and trusted use of data and information:
- He Tāngata — Improve outcomes for service users, whānau and communities.
- Manaakitanga — Uphold the mana and dignity of those who share their data and information.
- Mana Whakahaere — Empower people — include them and enable their choices.
- Kaitiakitanga — Act as a steward in a way that’s transparent, understood and trusted.
- Mahitahitanga — Work as equals to create and share valuable knowledge.
Be transparent with service users
Transparency is about respect and building trust. Help people understand about the collection and use of their data or information, their right to access and corrections, and what choices they have.
Collection and use
- What’s collected or used, why it’s needed, how it’ll be used and how that will help them or others.
- If and why it will be linked with other information about them.
- What it will not be used for and who will not see it.
- If and why it will be shared with other agencies or professionals.
- What laws allow the collection or use.
Access and corrections
- Their right to access data or information and ask for corrections to be made.
- What will happen if the information will not be changed in response to their request.
- What choices they have about who sees their information or how it’s used.
- If they don’t have a choice, why.
- How they can be involved in decisions around the use of their data or information.
Keep in mind that people can think of their information as being about them even if it does not identify them. It’s good practice to be transparent and offer choice even if the information is collected or used in a way that won’t identify them or others.
Be transparent about purpose
In some situations you may not be the person deciding what data or information to collect or how to use it. In other situations you may have a lot of room to decide what information to collect.Either way, it’s vital to understand why you’re collecting people’s information and how it will be used by your agency or other agencies that you may share it with.
If you’re not sure, then it will be hard to be transparent with service users — and the Privacy Act 2020 says agencies must be transparent when it’s their personal information (it can or does identify them). DPUP recommends this as good practice when it’s about them but doesn’t identify them.
Remember that misinterpretation, misuse or careless use of people’s information can have serious consequences for them, their whānau or community.
To understand more, see the Transparency and Choice Guideline.
If you help decide what to collect and why, then advocate for involving a wide range of people, including service users, in the decision-making process.
- Be clear what the benefits are of collecting or using this information for service users, whānau, communities or the general public.
- Being clear about purpose isn't just about being ethical. The Privacy Act 2020 says information should only be collected if there is a clear, reasonable need for it and should only be used for the purpose it was collected for, unless there is a specific exception.
- If you are not sure why you need to collect a piece of information or data, you have the right to ask.
- No agency or professional should ask for data or information to be collected for them, or shared with them, without explaining why they need it and how they’ll use it.
People should have as many choices as possible about their data or information. Choices can be about what information is provided, how it’s provided, recorded or shared, and who gets to see or use it. There may be situations where it’s not safe or appropriate to offer choices. Consult with others and think about this carefully as it can have negative effects on people’s trust and engagement. The way you can support choices will vary depending on the work you do and how you interact with service users.
The Mana Whakahaere Principle asks you to:
- where possible, give people choices and respect the choices they make
- give people easy access to and oversight of their information wherever possible.
Some practical ways to do this:
- Make sure people know about their choices and the consequences of them.
- Support people to make choices — how you interact with them can encourage them, make them feel safe and help them say what they need to or ask questions.
- Be an advocate and help those who decide what to collect or how it’s used. Be sure to understand what choices can look like in the area you work. If there isn’t a choice, explain why and let people know who they can talk to about it, or how they can make a complaint.
- Check back with service users when possible. Things change and making a choice isn’t necessarily a one-off thing.
Be proactive about access
People have a legal right to access their personal information (that does or can identify them) and ask for corrections to be made, except in specific situations. Be proactive and make it as easy as possible for service users. Do not wait for them to ask. Tell them about their rights, and encourage and support them to use those rights.
There are lots of ways to be proactive. Think about the context of your work as well as any relevant legal, organisational or ethical requirements.
Some practical ways to do this:
- Learn how access works in your agency. It can be simple: turn a computer screen around, show people their notes, provide photocopies, copy them in on emails about them.
- Make it a normal part of conversations to talk about data and information, something like: “I take notes when we talk so I can remember what we have covered – would you like a copy?”
- Let service users know they can ask for corrections. If it’s your professional view that you do not believe something should be changed then explain that and note down what the service user would prefer to have recorded as well.
- If information will be shared with other agencies, explain that and make sure people know how to access what other agencies hold. Help them do that if that's appropriate.
Sharing data and information
Generally sharing information at the frontline is about sharing personal information (that does or can identify people) between agencies so service users can access support.
Sharing value is about sharing the knowledge created using data and information from or about service users, whānau and communities. It’s about the Mahitahitanga.
- Look for opportunities to use your expertise to help shape data analysis, research or other ways of understanding data and information.
- Advocate for service users’ voices to be included.
- Advocate for service users’ choices about how their information is used to create insights.
- If you create insights, do research or other forms of analysis, then safely share it to grow collective knowledge. This includes sharing the de-identified data sets with those who have a legitimate interest to improve wellbeing.
- Uphold the DPUP Principles when sharing.
- Support services users choices whenever possible.
- Follow any other ethical or legal requirements that relate to your work.