When people trust that their data will be used as they have agreed, and accept that enough value will be created, they are likely to be more comfortable with its use. This acceptance is referred to as a social licence.
The Partnership will use what it learns through its conversations with New Zealanders to propose a set of data guidelines. It is envisaged that these will include a set of principles which should apply when personal data is used and can be easily understood by users as well as the subject of data.
To have meaningful conversations with New Zealanders, the Partnership has chosen three topics and we will use these to explore the value of data use and understand people’s concerns. Through these topics we aim to explore questions in a way that is tangible and relates to people’s daily lives. The topics selected by the Partnership’s working group are:
Sharing personal health data
Effective data use and sharing could prove revolutionary in the way health care is delivered and lead to exciting breakthroughs in medical research.
The sharing of such data can pave the way for more personalised health care, enable individuals to make better-informed lifestyle choices, and help researchers to develop new treatments. But for many people, health data is deeply personal and they are nervous about it being shared – even if it has been anonymised.
The development of the Fitbit has enabled people to monitor their lifestyle. The information collected could also be shared with health services to support clinicians and also strengthen medical research. However, the same data could also potentially be used by insurance companies to make assumptions about people’s lifestyles and provide cover accordingly.
The Internet of Things refers to the increasing array of previously offline devices, such as TVs, fridges, cameras, sensors and wearable devices that are now connected to the Internet, as well as smartphones that collect and exchange data from diverse locations. It has been estimated that by 2020 there will be over 26 billion connected devices.
On a broader scale, the Internet of Things can be applied to things like transportation networks: “smart cities” which could help reduce waste and improve efficiency.
The development of driverless cars is very exciting. They present the opportunity to create more efficient and safer transport systems. But what will happen if things go wrong? Imagine a driverless car collides with a pedestrian. Who would be to blame? Perhaps the programmers who wrote the computer algorithms?
Social investment refers to work led by the Social Investment Unit, a cross-agency team, to exchange data about identifiable, at risk people to target effective social support.
By using data, the Government has an opportunity to use public money more effectively and spend it on interventions which are likely to be more successful and save taxpayers’ money in the longer-term.
Giving community organisations and Iwi access to government held data could allow them to work with clients more effectively and deliver improved outcomes for communities. This may also save taxpayers’ money with funding being more effectively targeted. But others worry about the security of such sensitive data, and whether this might result in fewer resources being available to support vulnerable people.