We need to be careful that just because we have that data we can use, doesn\u2019t mean we shouldDame Diane Robertson, Data Futures Partnership\n\u201cWe are developing new types of technology allowing us to do things with data that we did not dream about 10 years ago, five years ago, even two years ago.\n\u201cWe have more and more data flowing through than we can start to use.\n\u201cBut just because we have all the data and just because we have the technology, should we be doing things with it?\u201d\nDame Diane Robertson, chair of the Data Futures Partnership, lays out this challenge facing organisations that are collecting and holding greater volumes of data.\nRobertson, who spoke on \u2018Trusted and Ethical Data Use\u2019 at the recent SAS Users of New Zealand (SUNZ) conference in Wellington, adds this question to the mix: \u201cWhat are the things we shouldn\u2019t be doing with it?\u201d\nThe Data Futures Partnership is an independent group that was created in 2015 by the government to develop innovative solutions to data-use issues.\nNo caption\nTrusted data use is an important part of this, says Robertson at the conference, which was attended by analytics professionals.\nThe partnership is working with New Zealanders to develop social license guidelines for data use. The guidelines, according to the Data Futures Partnership website, will set out the ways in which those working with data can build confidence by using data safely and in a way that will be of benefit to individuals and the wider public.\n"I am passionate about the power of data and how trusted data sharing can be used to change lives for the better," she says, of her role.\nAt the SUNZ conference, Robertson discusses the concept of \u2018social license\u2019.\nSocial license is \u201cwhen 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.\u201d\n\u201cWe need a framework for social license,\u201d she says. \u201cSocial license is not something you give yourself.\u201d\n\u201cThere are lots of things that can be done with data,\u201d she states. \u201cBut are they right?\u201d\nTo illustrate, she shows contrasting samples of positive - and otherwise - use of data.\nA recent example of the latter was when the Ministry of Social Development asked not for profits to give them personal data, not just data about clients themselves but data about clients' children and clients\u2019 partners.\nThe not for profits replied, \u2018No, you can\u2019t have it, and we think you are breaching the privacy of our clients and that we think this is not a good thing to do\u2019.\n\u201cWe need to be careful that just because we have that data we can use, doesn\u2019t mean we should,\u201d Robertson says.\nPositive use of data\n...and otherwise\nA positive use of data is the Southern District Health Board\u2019s HealthOne, where patient data is shared between between doctors, pharmacists and ambulance service to provide the best possible picture of the patient.\nIn an accident, the hospital can treat a patient efficiently and quickly, for instance, when they know if the patient has any medical complications such as allergies.\nShe cites another initiative, Manaiakalani, an education programme to help improve students outcomes for low decile schools in Auckland.\n\u201cWe can see where good examples of data is shared and technology is used with great outcomes for people.\n\u201cWhen you get it right, the benefits are clear,\u201d she says.\n\nLessons from the field\nRobertson was head of the Auckland City Mission before her current role.\nDuring her term, the City Mission had a research project called Family 100, where they interviewed families living in poverty. The participants provided detailed information on a wide range of relevant topics including housing, food, services, education, justice, debt, employment, health and support networks.\nShe says the families were asked to describe the organisations they visited in a span of two weeks. These included government agencies (e.g. social services and justice), health networks, debt agencies and churches.\n\u201cOften these families get told \u2018to get a job\u2019,\u201d she says. \u201cThey have got a job, it takes all of their time to go around all of these agencies.\u201d\nThe agencies a family of four visited during a two-week period\nEvery time they go to these agencies, they are asked the same questions - like their name, birthdate, the last time they were here, the number for their benefit.\n\u201cData is collected and collected,\u201d she says. \u201cEvery time they go to another agency, they [answer] the same formula questions.\u201d\nSome data will be different or peculiar to some agencies.\n\u201cAll the demographics are just the same. They go to an agency, they are seeking help for something. They have to give the story every agency wants to hear.\n\u201cHow much easier [it would be] if these families could actually have one source where data is collected, where the data is shared around the system, where they don't repeat it every time they go in.\u201d\nShe says clients would like this to happen.\nRobertson says some of the families are asking why they can not have an app to get their own benefit, or to look at their debt?\n\u201cWe have apps on the phone that we use,\u201d says Robertson, \u201cand yet, we expect these families to walk around the system and share the data with everybody, repeating the data and having it collected.\u201d\nShe says she asked families, \u201cwhat value did you get out of this\u201d, after meeting with the agencies over the two weeks.\n\u201cMost of them would say, \u2018little or nothing\u2019,\u201d she states. \u201cThink about the cost and the outcomes for the way we collect and use data for families. It is inefficient, it is not held and it is not shared, and does not create better outcomes for people who are in these systems.\u201d\nShe says her work at Data Futures is about social investment. \u201cI am passionate about using data better to get improved outcomes for families,\u201d she says and also to include people in that conversation.\nShe says the partnership has held a series of workshops nationally, from Invercargill to Whangarei, on how New Zealanders feel about their data being used and shared.\nThe participants were across a broad section of people, including Pasifika, rural\/urban, homeless, school students and older people. There were also 4000 people who were involved using an online version of the workshops.\n\nThey used three hypothetical data use scenarios for medical data, education records and smart street lighting.\nThe research explored people\u2019s comfort levels and how they weigh-up trust\/benefit in the different scenarios. \nFor instance, when it came to health data, there was a value proposition, to the doctor and ambulance paramedics, and to the person who is being treated more effectively and efficiently.\n\u201cWhen there is no value proposition, they want to know what you are going to use it for, how it is going to be used, they want to know about control,\u201d explains Robertson.\nThe people were also asked how they would feel if their anonymised data was used to develop policies, and given to business, iwi and government.\nNo caption\nI am passionate about the power of data and how trusted data sharing can be used to change lives for the betterDame Diane Robertson, Data Futures Partnership\nWhen people were asked what they think the guidelines should contain, certain themes emerged. \nThese include purpose (what will it be useful for?), value (what will I get out of it, what will you get out of it?), use (what are you going to use it for?) and control (informed consent and the ability to remove permission as well as time limits on permission).\nOne of the biggest issues is that people don't trust the data held about them is accurate and want to access it look at it and check if it is accurate and valid.\nShe says other themes that emerged were security (data breaches) and transparency.\nAs well, they want a governance body, a form of Data Commission, an independent authority that deals with complaints.\n\u201cMore and more of data is being collected about us that we don't necessarily have control of,\u201d she states. Photos are taken of people as they walk down the street, or their information is collected as they swipe their bus cards.\n\u201cWe should have control of how data is being used. Is it being used for our benefit, or is it being used as a deficit model against us?\u201d\n\u201cSocial license is going to be the biggest issue around data,\u201d she states.\n\u201cUnderneath all that, you have to determine how to use it, its purpose, its value, its security and its control. But most of all, what you need to be doing is having a good engagement with the people you are developing products for data use, to understand how it can benefit people and for people to understand the benefits for them.\n\u201cWe need to remember one of our biggest jobs is to extract the value from data,\u201d she tells the SUNZ conference attendees.\n\u201cWe need to start thinking, what\u2019s the value, what\u2019s the risk, and how to mitigate the risk."\n\u201cCollect the right data,\u201d she continues. \u201cGet as much value as we can, to make New Zealand a fantastic place to live in.\u201d\nRobert O'Brien, data scientist at Noos, talks about the Aotearoa New Zealand Data Commons project. He says the project can propel New Zealand as a world leader in the trusted, inclusive and protected use of shared data, to help deliver a prosperous society.\nSend news tips and comments to email@example.com\nFollow Divina Paredes on Twitter:@divinap\nFollow CIO New Zealand on Twitter:@cio_nz\nJoin us on Facebook.