We all respect the need for data protection. But if we want to offer better services for citizens, we need to strike a balance between data privacy and our public duty to enhance and even save lives.
Eric Applewhite, KPMG in the UK
Sometimes you hear a phrase that says it all. The Farr Institute’s #datasaveslives campaign does that for me. In highlighting the positive impact of data research on public health, its simple message reminds me why our continued dialogue about data sharing is so important. It’s about lives and wellbeing and using information creatively but responsibly to help others.
I worry we have the balance of that conversation wrong in the public sector – and it isn’t entirely our fault. We’re influenced by values that are so important to our culture, and by a legal system that, taken to an extreme, can actually create a disincentive to even start conversations about improving lives with data, because it’s too risky or too difficult.
Why do discussions about data sharing for the public good feel so much like trench warfare? Why are they so hard to sustain? How come we trust big companies to take care of our data, yet push back on government data sharing programs? That has to be wrong – doesn’t it?
When I lived in New York I heard about a mother and her two young daughters evicted from their apartment. They faced an uncertain future in sheltered accommodation. Fortunately their case worker was able to quickly access the family’s welfare records, which soon got them settled in new housing. Surely that’s what good data sharing is all about? I don’t think many people would argue with that.
This story demonstrates just one of the many ways in which data sharing can make people’s lives better – and make government more efficient and effective. There’s so much to gain, in the form of early intervention and prevention, better targeting of services towards those most in need, and a move towards efficient, self-service for citizens – all underpinned by simplified business policies.
Sadly, the reverse is also true. When government agencies can’t exchange information, citizens sometimes suffer and costs can rise. So you can get caseworkers failing to spot people who need support or who are at-risk. And countless hours can be wasted on unnecessary administration; hours that could be better spent providing service and care to people.
What I’ve noticed is that some attempts to share citizens’ information to improve well-being can be held back by a hesitant and sometimes too conservative information sharing culture. The laws and processes so important to us have the unintended consequences of making it harder for governments to share when they are allowed to and expected to by those they serve. After all, why take the chance of sharing when one accidental or intentional breach can undo the impact of a thousand data sharing success stories – especially if it’s in the public eye.
This fear stems from a system skewed towards the consequences of poor sharing and away from the benefits of positive sharing. Both are important, but it seems to me we’ve got things the wrong way around. We should begin with a duty to share and balance that with a duty to protect privacy. A proportional and balanced conversation about both aspects of protection privacy and safety should be the norm not the exception. That balance cannot happen without strong leadership to sustain an information sharing culture change.
I was recently at a workshop with health leaders discussing barriers and opportunities in the UK health system. A participant summed this up better than I ever could when she said: “I’d rather be held to task for sharing data when I shouldn’t have, than have to answer for why I didn’t share data when I should have. There’s simply too much at stake when it comes to our patients.”
All around us we’re starting to see strong demonstrations of this kind of leadership, along with shifting attitudes towards information sharing. I’m inspired by organizations like the Farr Institute. They squarely remind us that improving lives is what matters, and that we shouldn’t be apologetic about using data to this end.
Globally, you need look no further than the UK’s Office of the National Data Guardian and New York City’s Executive Order 114 (PDF 16.3 KB) for Health and Human Services. Both empower the public sector, and both place sharing data for the public good in a proportional rational balance with protecting privacy. By supporting proportionality in data sharing decisions, they remind us to seek opportunities to share – as long as we can find a valid information sharing path in law and statute seeking consent when needed.
The overriding message is: ‘set out and try’ rather than ‘make sure you don’t fail.’ This is a great example of ‘whole system leadership,’ which can help create a collaborative, problem-solving, data sharing culture; one that recognizes the many advantages to government and its citizens, and is motivated to overcome barriers if it helps others.
It’s this kind of mindset that’s driving a major UK data sharing and collaboration program, where our KPMG in the UK member firm worked with the city of Manchester to reimagine how it can better share information as a whole system for the public good and build an incremental capability that increasingly puts its residents at the center of decisions about what to share and when to share.
‘Greater Manchester Connect’ aims to create an organization-wide framework for data sharing, with common governance and standards for all its agencies. Its job is to build trust and an information brokering capability across a diverse set of programs and geographies, supported by strong, accountable leadership, to maintain momentum.
Some of the thinking behind this initiative was influenced by another highly successful data sharing program in New York City that our KPMG firm in the US assisted with. ‘Health & Human Services Connect’ (HSS-Connect) didn’t just have inspirational leaders; it also had an information governance team including lawyers and analysts, who together mapped out an information sharing path.
To me they were data sharing pioneers who bought into the vision and, in the words of one team member, were prepared to “test it and kick it hard” in order to find data sharing solutions. Because that’s what their citizens expected. They were pragmatic as well, targeting an ambitious success rate for their data sharing efforts. Equally, they acknowledged that some kinds of data are too private to share, and that sometimes validating that data shouldn’t be shared was as valuable as finding a way to share it.
There’s no escaping the fact that data sharing can be controversial, so it’s vital to quantify the benefits to strengthen your argument. A benefit estimate and realization model is a good way to consider the entire cost of the program. This can then be compared to the value of future efficiencies and savings, like less time spent on administration, more efficient case management, and lower care costs due to early intervention. Program managers have to track costs and savings to assess progress and justify the investment.
But it’s not just about numbers. It’s equally important to measure the outcomes in terms of improved quality of life for citizens. In New York, a series of outcomes were tracked, like improved mental, physical, and nutritional health, lower homelessness, and better child wellbeing and family stability. These kinds of improvements should, ultimately, improve outcomes for residents and reduce costs of care.
This kind of investment in the front of the process answers the question: ‘why should data be shared?’ and should pay huge dividends. When inevitable conflicts about information sharing arise, measurable benefits help refocus everyone’s attention to what really matters: the human and economic value of sharing.
The alternative? To wait for an adverse event – like the death of a child, a natural disaster or a terrorist attack – to highlight data sharing inadequacies. But who wants that? Surely it’s better to think of ways to prevent bad things happening in the first place?
Then there’s the question of who controls the data. Programs may wish to store all the information in one place to produce amazing insights. But each agency may feel a strong sense of ownership about the data they hold and be reluctant to let it sit outside the department for both legal and cultural reasons.
In our experience it’s better to avoid a protracted fight over ownership. A smarter and more practical alternative is to create a sophisticated ‘data federation’ capability, where information can be made accessible to other agencies but remains the possession of one agency. Access to that data can be safely controlled by program and role based security at the technology level giving confidence that only allowable sharing is occurring. You can complement this approach with a centralized data analysis facility that can draw on data from participating agencies and systems.
Because data sharing is typically seen as ‘administrative and risky,’ those overseeing it are often compliance-oriented and risk-averse. Media stories about leaked personal details only make them more guarded. But these people are also deeply passionate about protecting citizens and getting things right.
For me, one important step is turning our information governance professionals into information sharing ‘coaches.’ A fresh approach is needed, where they can put their arms around us and help us navigate the risks and opportunities in each data sharing path. This means trusting and supporting them as important members of the leadership team. By giving them the chance to look at opportunities early, these professionals can start to see sharing as a problem to be solved rather than a path to risky to be crossed. Empowered information sharing coaches can become the cavalry for a new kind of information sharing culture. They will save the day when information you should share and are allowed to share is threatened by poor process or inertia.
We can’t forget the role that citizens play in data sharing. After all – it’s about them and we’re mostly talking about their data. But all too often, public sector agencies go about seeking consent in the wrong way. In many instances, requests to share are delivered from a position of negativity or neutrality. And that doesn’t work. Instead of asking: “Will you donate your kidney when you die?” why not say: “Do you want to give someone the chance of a new life?” The private sector has mastered the knack of using value to gain consent, and government should also embrace similar cognitive and ‘nudge’ techniques to accentuate the positive and explain the value from sharing. We also need to make the actual opt-in process as quick and easy as possible while explaining why citizens should want in not out. Luckily nudge and behavioral techniques are increasingly becoming a core part of a proportional and human conversation with residents about what is in it for them.
Transparency is also the key to winning public trust and consent. Governments need to clearly state how they plan to use data. And to establish trust personal details should be accessible to citizens, so they can see what data is held, and correct or update their records. It goes without saying that the system should be accessible to all types of mobile device, using the most sophisticated identity verification and cyber security investments possible. By 2020, more than two-thirds of the world’s population will have a smartphone1, which is rapidly becoming the main vehicle for all online activity2. We should be testing consent models and approaches using mobile devices today, as people are already getting comfortable with this medium. And mobile communications are also making it easier to explain the value of sharing.
My glimpse of the future envisages government increasingly helping citizens to understand and control their digital identities. We’ll see more and more personal data stores used by citizens to manage their own data and consent online. Mydex (a personal data store controlled by the individual) and Hub of All Things (the HAT – a platform enabling individuals to trade and exchange their personal data) are good examples of what’s emerging in that space today. And increasingly, we’re all seeing government’s role as an information broker and steward for the public expand especially as it relates to exposing ‘open’ and public data for value. Places like Leeds and London are leading the way in this space in the UK along with Data.Gov in the US. Copenhagen is taking a step further to become one of the first public sector entities I’m aware of to try and monetize its public and private data in a citywide information marketplace. This may be a bridge too far for you or it could be a glimpse of the future where controlling and getting value from our ‘digital’ selves is something worth investing in and paying for. What I would say is it is clear to me that governments need to be thinking about their role and responsibility as a societal information broker in new ways. Things are changing and they need to be ready to help residents and citizens meet, manage, keep safe, and ‘optimize’ their digital well-being. Not everyone will land in the same place about how far the public sector needs to go but the time for beginning to develop your position is now. What’s at stake is a completely new relationship between citizens, governments, and data.
Because governments are at the heart of information and the public trust, I believe governments are uniquely positioned to accelerate this process. In fact, they have a duty to do so. Public sector chief information officers, chief executives and other leaders should be looking at this trend now and getting ahead of the wave. If we can entrust our most intimate details to big corporations, surely we can view the public sector as a truer custodian? After all, governments and their agencies are not generally seeking to gain commercially; their prime interest is in improving citizen outcomes and making themselves more efficient (which also benefits the public). If they can help citizens take control of their own data, it should be easier to get them to consent to data sharing, as they’ll see the value it brings.
When they share data, governments gain a more holistic, 360-degree view of citizens and their families. They can understand people’s needs more clearly in the place that they live, and focus on prevention and earlier intervention, to improve service and prevent harm. All of which should mean more efficient use of resources, an improved experience for citizens, and better outcomes for individuals and society. Privacy and confidentiality will always be high on the agenda. But, as the examples in New York and Manchester demonstrate, there is an opportunity to create a proportional and impactful information sharing culture, by being more positive about data sharing and emphasizing how it can help create a better world.
Eric Applewhite has over 20 years’ experience in technology and information sharing engagements across North America and Europe, focusing in the Health and Social Care sectors. He was the KPMG program manager for New York’s HHS-Connect program and advised Greater Manchester on developing its information sharing strategy in the UK.
1The number of smartphone users in the world is expected to reach a giant 6.1 billion by 2020, Digital Trends, June 3, 2015.
2In Less Than Two Years, a Smartphone Could Be Your Only Computer, Wired, 2 October 2015.