Data Protection and Use Policy

Be inclusive from the start

The value of insights depends on having good information to work with, and the relevance of those insights to improve outcomes. Including people with relevant experience and involvement in the provision of services from the start of the work, and throughout it, is likely to make the greatest impact on the eventual quality and value of the insights.

There are a number of reasons to do this, in addition to improving the relevance, usefulness and value of the insights:

• It will help build capacity and capability in working with data within the social sector. This increases the sector's collective ability to apply insights for improved outcomes, and helps to build trust and confidence through an inclusive approach that recognises shared outcomes.
• It ensures that knowledge about the availability and quality of information, and what is involved in collecting the information, inform the approach.
• It can help reduce the effort that may be involved in collecting information, for example, if similar information is already collected for similar purposes and can be lawfully used or shared.

Identify who may be interested

When personal or non-personal information is collected or used for something other than directly working with a service user, consider who else should be involved. Having a range of views, experiences, and skills can help to improve the value and quality of the work.

At each stage of the work identify people/agencies with these areas of experience, so that:

• Service users: those who provide the information, and are the intended beneficiaries of improved outcomes, can contribute to the thinking and provide their perspectives on the best ways of sharing insights from the information collected from them.
• Front-line service delivery: those involved in the original collection of information, even when it is ultimately used in a non-personal form, can contribute to the thinking.
• Community: other agencies involved in providing similar services or with similar service users can influence the work.
• Contracting and funding, or partnering: those who manage, monitor or account for the performance of funded programmes can ensure their needs are met. These might include government agencies, philanthropic groups, or community trusts.
• Policy / analysis / research: agencies working on related or similar insights can collaborate to reduce overall effort and increase overall value.
• Cultural experts: individuals with expertise in using data in a culturally appropriate manner can assist with the development or review of insights, taking into consideration the cultural context.

Examples of things to think about

• Who should, could or must be involved given the nature of the work?
• If the potential insights may be useful to Māori or iwi groups, how might they be involved?
• If insights may be useful to other groups with specific interests, such as Pacific or disabled people, are they involved?
• What processes are in place to involve service users and communities' points of view as well as NGO and service provider input?

Create a plan

Create a plan for working together to proactively develop and share insights with people, and communities and agencies with an identified and legitimate interest. This should be incorporated into standard planning processes. Doing this up-front will inform the approach and is critical to the success of the approach. Use this planning stage to evaluate the intention of the work with respect to each of the Policy Principles, consider any ethical concerns and relevant professional codes of practice, and identify and assess any risks or opportunities.

Examples of things to think about

• Who could help with this planning step?
• When is the best time to discuss this? For example, when setting up a contract between funder and service provider, initiating a research activity, or during regular planning processes (yearly, quarterly) that can include a focus on existing collections of data and insights.
• Are there any legal requirements to share, or alternatively obligations to keep some information confidential? What impact will that have?
• What data is needed to derive or inform the insights?
• What understanding of the cultural context of the data is needed?
• How can outcomes of the work be shared with service users, whānau, communities and service providers who have a legitimate interest?
• What kind of support might people need to understand or apply the outputs of the work? If there are different audiences with different needs, does the work address those?
• Does your agency have existing collections (of data or insights) that other agencies involved in related outcomes may be able to apply in their work?
• Is it possible to use existing collections to reduce further collection or overlapping activity?

Keep people actively involved during the work

On-going involvement in the work could take a number of forms. These may include:

• seeking regular feedback from people identified at the outset
• seeking more formal review of insights in draft form, for example from an advisory group
• day-to-day involvement from other agencies to develop the insights
• periodic secondments or more structured collaborative projects.

Examples of things to think about

• How can the effort and cost of involving others be recognised or shared?
• As the work is carried out, what's the best way to monitor that the developing insights will be valuable to others, and usable by them?
• If people are interested, but only wish to be kept informed, how might that work?
• If others are working on related ideas, are there opportunities to collaborate and reduce overall effort, or enhance overall value?
• If there will be effort involved in collecting the information, are there ways to minimise this or to recognise the cost of doing so?

Share the insights

Think about who might benefit, what they might need, and how they will have access.

Think about the nature of the work and talk to those identified who may be interested in it. Get their views about what approach makes sense to them as well as to your agency.

If the work is not sensitive, and may have broad public interest, it may be simpler and more valuable to use an 'open data' approach. See data.govt.nz to find out how you can do that. In this context, to ensure that the insights can be fully used without copyright-related concerns, it may be desirable for government agencies to license copyright works containing the insights under a Creative Commons licence in accordance with the New Zealand Government Open Access and Licensing framework (NZGOAL). NZGOAL is all-of-government guidance for agencies to follow when releasing copyright works and non-copyright material for reuse by others. If an agency takes this approach, it should follow the NZGOAL Review and Release Process to ensure that it has the legal rights required to license the copyright works and that it takes other legal considerations into account.

Even if insights are sensitive in nature, it may still be very useful to share them in an appropriate way with people who can apply them for better outcomes for service users. To ensure the value of the work is realised, the default starting point should be to plan to share the insights, with the onus on those who have the data/insights to justify why they should not be shared more broadly, whether for legal, safety, cultural sensitivity or other reasons.

Examples of things to think about

• If the information is non-personal, but still sensitive, how can access be controlled to limit misuse or misinterpretation? Alternatively, what additional support might interested agencies need to limit or reduce these risks?
• How is privacy being protected? When sharing insights with others, take all reasonable steps to ensure people can't be identified from those insights, either from the insights alone, or in conjunction with other information. This can be particularly important when only a small number of people are affected by the subject matter of the information.  For example, the small number of people affected by a particular form of disability or condition.
• If sensitive insights are being shared with specific audiences and/or there is a re-identification risk, consider whether contractual controls on use and/or re-identification would be desirable.
• Are there any limitations or bias in the data (for example, data gaps, quality issues) that need to be communicated with the insights?
• Can the methodology and the software code used to develop or yield the insights also be shared, for openness and transparency?
• Are the insights being shared in line with the original plan? If not, why not? 

In particular, close the loop with those directly involved

This may be the service users themselves, agencies involved in the original collection or creation of data, and people directly involved in doing or reviewing the work.

Each should be given an opportunity to understand the insights created, and to use them. There may be other parties who have an interest, but it's particularly important for trust and confidence reasons to ensure that the loop is closed with those directly involved in the work. It recognises their contribution and increases value through broader application.

Confirm the value and identify learning

For most agencies, the work of developing and applying insights is ongoing. There are multiple 'loops', in which we explore, consider, and apply a growing understanding of how services can work better for people.

Regularly check-in with agencies and communities you've shared insights with, to understand what worked, and what didn’t, and to use this learning to further inform the next cycle of thinking. This process will enable a greater understanding of the value of insights and how they are being used to improve the wellbeing of people. The value of these outcomes can then be communicated back to people who provide their information (see the Transparency and Choice Guideline).