This is a 2-page summary of the Policy for people who work in roles to do with policy development and service or programme design:
If you‘re a policy analyst, service designer, or develop social services, programmes or interventions it’s likely you use data and information about, or from, service users, whānau or communities to help you understand issues and create solutions.
The information is most likely aggregated and doesn’t identify anyone but it’s still important to consider the people behind the data when you use it or make sense of it. You might also have a role in deciding what should be collected about people and how it will be used once a programme, service or intervention is up and running.
When you use people’s information or data, you have an obligation to act as a Kaitiaki (steward). Even if you never directly meet them you still have a role in supporting Manaakitanga and Mana whakahaere.
Keep in mind that 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. Whenever your work is about people, this summary captures the key elements of good practice when collecting or using information from, or about, people.
The Policy Principles
The Policy Principles are values and behaviours that underpin respectful, transparent and trusted use of data and information across the social sector:
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.
You can find the full versions of the Principles here.
Work as equal partners and involve service users…
Mahitahitanga is about working with others to be respectful, transparent and trustworthy when using people’s data and information to develop policies, services, or programmes. You might involve frontline workers, community representatives, cultural advisors, privacy officers and service users. Collaboration helps with accuracy.
Collaborate in way that makes sense for the work. Sometimes it will be a simple check that you're using the right numbers in the right way, other times co-design and rich engagement might be needed. Example one would suggest less collaboration than example two, where the information is more sensitive, and the impact greater:
Data or Information: doesn’t identify people and doesn’t include in depth details about their lives (like census demographics).
For: Mapping out the over 65 population across a region.
Data or information: detailed information about sensitive issues (for example experiences of children in foster care).
For: Deciding whether to fund and implement a new service.
Be clear about the purpose…
Write down what data or information you plan to use and why it’s needed. Do the same with anything you suggest should be collected from or about service users as part of a policy, service, or programme being implemented.
This helps check that it’s fair, reasonable, ethical and legal to use it, or require it to be collected. It also helps transparency about the collection and use of people’s information.
- Keep focused on He tāngata. Make sure it’s clear how any collection or use of data or information will benefit service users, people in similar situations, or the wider community.
- Get a wide range of views, including from service users, about what is fair and reasonable.
- Any use of information that identifies service users needs careful thinking and thorough checking. The purpose must be absolutely clear and understood by all involved and should be communicated to service users.
- If the data or information wasn't collected for this purpose – is it legal, ethical, respectful, fair and reasonable to use it? Just because it exists doesn’t mean it should be used.
- If identifying information isn’t needed – it shouldn’t be collected. “Just in case” isn’t an okay reason to collect data or information.
- If people’s data or information will be used for a purpose they don’t know about or may not agree with (whether it identifies them or not) – does the purpose really justify it? How would it affect people’s trust if they found out?
Even if you don’t meet service users you still need to provide an explanation about the use of their data or information in a way they understand. Then anyone who collects it can explain it to them. If the policy, service, or programme that you are developing is going to require data or information to be collected from service users then they will need to know about why they are being asked for their information.
Be transparent and support choices
People should have as many choices as possible about what data or information they provide, who gets to see or use it and why. Incorporate this into the design of services, programmes or interventions. Keep in mind that just because it doesn’t identify them, doesn’t mean they won’t want a say.
There may be times when it’s not safe or appropriate to offer choices. If this is the case – it should be made clear why that is fair, reasonable and respectful. Consult with others and think carefully about this. Not being transparent or giving choices can have negative effects on people’s trust and engagement.
Be proactive about access and correction
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 covered by the Privacy Act).
If data or information will be collected as part of the implementation of a service, policy, programme or intervention, think about how access and correction will work.
- How can access be as easy as possible for those who do the collecting and the service user?
- What capability or infrastructure needs to be included in service or programme design to make access possible?
- How will data or information be tracked so it’s easy for services users to know what organisations have it?
- Make sure explanations are available for people about what information is accessible and how changes can be made.
Mahitahitanga is about working together though all phases of your work with data and information. This means sharing the knowledge created using data and information from, or about service users, whānau and communities. See the Sharing Value guideline for more information.
Sharing insights opens doors to understanding and is a powerful tool for better support for New Zealanders. It’s through Sharing Value that the sector’s collective knowledge grows.
- Be practical and proactive: Bring people in to “do the doing”, hold workshops, get people to review your work, test your thinking and give you feedback as you apply data and information to your thinking, design and development.
- If any of your work results in new insights, then share it in an easy-to-understand way. Who can use this knowledge to support wellbeing? Think about how to share what you have learned with service users.
Service users need to know:
Collection and use
- What’s collected or used, why it’s needed, how it will be used, and how that will help them or others.
- If and why it will be linked with other information about them.
- What it won’t be used for, and who won’t see it.
- If it will be shared with other agencies or professionals and why.
- 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 won’t be changed in response to their request.
- What choices they have about who sees it 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.