This is a 2-page summary of the Policy for people who work in analysis, research, and evaluation roles.
Information from, or about, service users is often used for analysis, research, evaluation, and other similar activities in the social sector.
Qualitative or quantitative analysis, modelling and forecasting the cost of services, research into social issues, or evaluation of interventions are all examples of where people’s data or information may be used. If you’re involved in this kind of work you might decide what to collect from or about people, or you might use information that’s already gathered.
As a Kaitiaki (steward), create a culture where data or information is used in respectful, transparent and trustworthy ways: uphold people’s mana, and recognise the person and story behind the numbers. Support 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 then being clear about purpose, supporting transparency and choice, enabling people to access their information, and sharing the value of the insights developed using people’s information, are key parts of good practice.
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 in a way that reflects a joint responsibility to be respectful, transparent and trustworthy. Involve others in designing research, analysis, or evaluation, deciding what to collect or use, how to analyse information, and forming conclusions and insights.
Collaborate in ways that makes sense in the context and work. If there’s no intention to use identifiable or sensitive data, no negative consequences for people, and they’re aware this work is happening, then this will need less engagement than uses of sensitive information, or work that has big implications for people.
Involve people who understand the circumstances of those the information is about: frontline workers who collect it directly, and those who work with people, whānau, and communities in this context. Include service users themselves wherever possible.
Be clear about the purpose…
Write down the purpose for collecting or using people’s data or information in an easy to understand way. It’s vital to be clear about purpose so that you can be transparent, and check ethical and legal requirements. Remember: if identifying information isn’t needed, then it shouldn’t be collected or used. Never ask for any data or information to be collected, or shared, without explaining why it’s needed or how it will be used.
“Just in case” isn’t an okay reason to collect data or information. “We have it so let’s use it” isn’t okay either. With administrative data being easily available for analysis, information and data flowing around and through various kinds of reporting and sharing, and technology that makes it possible to track and match information, it has become important to stop, think and check why something is collected, why it’s passed on and if it’s ok to use it.
- 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.
- If you decide what to collect and why, then get a wide range of views, including from service users, about what is fair and reasonable to do for this purpose.
- Any use of information that identifies service users needs careful thinking and thorough checking. The purpose must be clear, understood by all involved, and communicated to service users.
- If the data or information wasn't collected for this purpose, then is it legal, ethical, fair, and reasonable to use it?
- If people’s 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 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, so that anyone who collects it can explain it to them.
If you’re using it, you’re responsible for explaining it.
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. 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 personal information is used for analysis, research or evaluation think about how access and correction will work. Recognise the person behind the data – access is part of upholding their mana and dignity.
Mahitahitanga is about working together though all phases of analysis, research, and evaluation. 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.
Think carefully about what to share and who to share it with. For those with a legitimate need, provide safe access to what’s appropriate. This might mean de-identified data tables and details of people’s experiences (that doesn’t and can’t identify people), summaries of data/information, or final results.
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.
A note on “research and statistical purposes”
The Privacy Act says people don’t need to be told when their data or information will be used for “research and statistical purposes” that won’t or can’t identify them. This Policy recommends that it’s good practice to be transparent about any purpose or use, even when people can’t be identified. In terms of transparency, writing “for research and statistical purpose” isn’t very clear. It doesn’t accurately describe what’s being done, how it’s been done or why and won’t mean much to service users, or other stakeholders.
- How will people’s mana and dignity be upheld if their data or information will be used for research, analysis or evaluation?
- How do those whose data or information it is feel about this purpose? Ask them, or talk to groups of service users.
- Would another method or technique achieve the purpose well enough and allow more choice?
- Were people told that their information would be used for this? Did they have a choice? What does that mean for how fair, reasonable and respectful it is to use their information this way?
- What collection and storage options will make access as easy as possible?
- Is it clear for service users what kind of information is accessible and how changes can be made?
- If data or information is shared or linked across agencies, how will people know where it’s gone, how to access it or ask for corrections to it?
- Have a wide range of people being involved in undertaking the work? Have service users?
- Is there a plan to share value with the communities and service users that the work is about?
- Have ways to support Kaupapa Māori, ‘by Pacific for Pacific’ research or ownership of analysis by those it affects been explored?