Can This App That Lets You Sell Your Health Data Cut Your Health Costs?


Ben Schiller at FastCompany: “Americans could do with new ways to save on healthcare….

CoverUS, a startup, has one idea: monetizing our health-related data. Through a new blockchain-based data marketplace, it hopes to generate revenue that could effectively make insurance cheaper and perhaps even encourage us to become healthier, thus cutting the cost of the system overall.

It works like this: When you sign up, you download a digital wallet to your phone. Then you populate that wallet with data from an electronic health record (EHR), for which, starting in January 2018, system operators are legally obliged to offer an open API. At the same time, you can also allow wearables and other health trackers to automatically add data to the platform, and answer questions about your health and consumption habits.

A prototype of the app. [Screenshots: CoverUS]

Why bother? To create a richer picture of your health than is currently held by the EHR systems, health providers, and data brokerages that buy and sell data from doctors, clinics, pharmacies, and other sources. By collecting all our data in one place, CoverUS wants to give us more autonomy over who uses our personal information and who makes money from it….

CoverUS, which plans to launch in the first quarter of 2018, will pay for the data we gather in the form of a fixed-price cryptocurrency called CoverCoin. Users generate coins by signing up and then sharing their data. The startup then hopes users will be able to spend the coins on services that improve their health (like gym memberships) or deposit them in a health savings account where the coins can be exchanged for insurance plan savings. Sealey says it’s in discussions with several providers…(More)”.

How Cities Can Embrace Innovation Without Sacrificing Public Health and Safety


Jennifer Bradley at Next City: “Many city governments in the U.S. and elsewhere are torn when it comes to innovation. On the one hand, constituents live in a world that increasingly demands flexibility, interaction, and iteration, and governments want to be seen as responsive to new ideas and services. On the other, the “move fast and break things” ethos of many technology companies seems wildly inappropriate when public health and safety are at stake. Cities are bound by regulatory processes developed decades ago and designed for predictability, stability, and protection—not for speed, ease, and invention. In addition, regulations have accumulated over time to respond to the urgent concerns of years or even decades ago, which might be irrelevant today.

The real work for city leaders today is to create not just new rules, but new ways of writing and adjusting regulations that better fit the dynamism and pace of change of cities themselves. Regulations are a big part of the city’s operating system, and, like an operating system, they should be data-informed, continually tweaked, and regularly refreshed to respond to bugs and new use cases.

We have recently launched a site with recommendations and case studies in four areas where technology is both pushing up against the limits of the current regulatory system and offering new tools to make enforcing and following rules easier: food safety, permitting, procurement, and transportation….(More) (Innovation Regulation site)“.

Democratising the future: How do we build inclusive visions of the future?


Chun-Yin San at Nesta: “In 2011, Lord Martin Rees, the British Astronomer-Royal, launched a scathing critique on the UK Government’s long-term thinking capabilities. “It is depressing,” he argued, “that long-term global issues of energy, food, health and climate get trumped on the political agenda by the short term”. We are facing more and more complex, intergenerational issues like climate change, or the impact of AI, which require long-term, joined-up thinking to solve.

But even when governments do invest in foresight and strategic planning, there is a bigger question around whose vision of the future it is. These strategic plans tend to be written in opaque and complex ways by ‘experts’, with little room for scrutiny, let alone input, by members of the public….

There have been some great examples of more democratic futures exercises in the past. Key amongst them was the Hawai’i 2000 project in the 1970s, which bought together Hawaiians from different walks of life to debate the sort of place that Hawai’i should become over the next 30 years. It generated some incredibly inspiring and creative collective visions of the future of the tropical American state, and also helped embed long-term strategic thinking into policy-making instruments – at least for a time.

A more recent example took place over 2008 in the Dutch Caribbean nation of Aruba, which engaged some 50,000 people from all parts of Aruban society. The Nos Aruba 2025 project allowed the island nation to develop a more sustainable national strategic plan than ever before – one based on what Aruba and its people had to offer, responding to the potential and needs of a diverse community. Like Hawai’i 2000, what followed Nos Aruba 2025 was a fundamental change in the nature of participation in the country’s governance, with community engagement becoming a regular feature in the Aruban government’s work….

These examples demonstrate how futures work is at its best when it is participatory. …However, aside from some of the projects above, examples of genuine engagement in futures remain few and far between. Even when activities examining a community’s future take place in the public domain – such as the Museum of London’s ongoing City Now City Future series – the conversation can often seem one-sided. Expert-generated futures are presented to people with little room for them to challenge these ideas or contribute their own visions in a meaningful way. This has led some, like academics Denis Loveridge and Ozcan Saritas, to remark that futures and foresight can suffer from a serious case of ‘democratic deficit‘.

There are three main reasons for this:

  1. Meaningful participation can be difficult to do, as it is expensive and time-consuming, especially when it comes to large-scale exercises meant to facilitate deep and meaningful dialogue about a community’s future.

  2. Participation is not always valued in the way it should be, and can be met with false sincerity from government sponsors. This is despite the wide-reaching social and economic benefits to building collective future visions, which we are currently exploring further in our work.

  3. Practitioners may not necessarily have the know-how or tools to do citizen engagement effectively. While there are plenty of guides to public engagement and a number of different futures toolkits, there are few openly available resources for participatory futures activities….(More)”

Choice Architecture: A new approach to behavior, design, and wellness


Book by Avani Parikh and Prashant Parikh: “From Vitruvius in the 1st century BCE on, there has been an attempt to understand how architecture works, especially in its poetic aspect but also in its basic functions. Design can encourage us to walk, to experience community, to imagine new ways of being, and can affect countless other choices we make that shape our health and happiness.

Using the ideas of rational choice theory and behavioral economics, Choice Architecture shows how behavior, design, and wellness are deeply interconnected. As active agents, we choose our responses to the architectural meanings we encounter based on our perception of our individual contexts. The book offers a way to approach the design of spaces for human flourishing and explains in rich detail how the potential of the built environment to influence our well-being can be realized….(More)”.

Could Bitcoin technology help science?


Andy Extance at Nature: “…The much-hyped technology behind Bitcoin, known as blockchain, has intoxicated investors around the world and is now making tentative inroads into science, spurred by broad promises that it can transform key elements of the research enterprise. Supporters say that it could enhance reproducibility and the peer review process by creating incorruptible data trails and securely recording publication decisions. But some also argue that the buzz surrounding blockchain often exceeds reality and that introducing the approach into science could prove expensive and introduce ethical problems.

A few collaborations, including Scienceroot and Pluto, are already developing pilot projects for science. Scienceroot aims to raise US$20 million, which will help pay both peer reviewers and authors within its electronic journal and collaboration platform. It plans to raise the funds in early 2018 by exchanging some of the science tokens it uses for payment for another digital currency known as ether. And the Wolfram Mathematica algebra program — which is widely used by researchers — is currently working towards offering support for an open-source blockchain platform called Multichain. Scientists could use this, for example, to upload data to a shared, open workspace that isn’t controlled by any specific party, according to Multichain….

Claudia Pagliari, who researches digital health-tracking technologies at the University of Edinburgh, UK, says that she recognizes the potential of blockchain, but researchers have yet to properly explore its ethical issues. What happens if a patient withdraws consent for a trial that is immutably recorded on a blockchain? And unscrupulous researchers could still add fake data to a blockchain, even if the process is so open that everyone can see who adds it, says Pagliari. Once added, no-one can change that information, although it’s possible they could label it as retracted….(More)”.

New York City moves to create accountability for algorithms


Lauren Kirchner at ArsTechnica: “The algorithms that play increasingly central roles in our lives often emanate from Silicon Valley, but the effort to hold them accountable may have another epicenter: New York City. Last week, the New York City Council unanimously passed a bill to tackle algorithmic discrimination—the first measure of its kind in the country.

The algorithmic accountability bill, waiting to be signed into law by Mayor Bill de Blasio, establishes a task force that will study how city agencies use algorithms to make decisions that affect New Yorkers’ lives, and whether any of the systems appear to discriminate against people based on age, race, religion, gender, sexual orientation, or citizenship status. The task force’s report will also explore how to make these decision-making processes understandable to the public.

The bill’s sponsor, Council Member James Vacca, said he was inspired by ProPublica’s investigation into racially biased algorithms used to assess the criminal risk of defendants….

A previous, more sweeping version of the bill had mandated that city agencies publish the source code of all algorithms being used for “targeting services” or “imposing penalties upon persons or policing” and to make them available for “self-testing” by the public. At a hearing at City Hall in October, representatives from the mayor’s office expressed concerns that this mandate would threaten New Yorkers’ privacy and the government’s cybersecurity.

The bill was one of two moves the City Council made last week concerning algorithms. On Thursday, the committees on health and public safety held a hearing on the city’s forensic methods, including controversial tools that the chief medical examiner’s office crime lab has used for difficult-to-analyze samples of DNA.

As a ProPublica/New York Times investigation detailed in September, an algorithm created by the lab for complex DNA samples has been called into question by scientific experts and former crime lab employees.

The software, called the Forensic Statistical Tool, or FST, has never been adopted by any other lab in the country….(More)”.

The nation state goes virtual


Tom Symons at Nesta’s Predictions for 2018: “As the world changes, people expect their governments and public services to do so too. When it’s easy to play computer games with someone on the other side of the world, or set up a company bank account in five minutes, there is an expectation that paying taxes, applying for services or voting should be too…..

To add to this, large political upheavals such as Brexit and the election of Donald Trump have left some people feeling alienated from their national identity. Since the the UK voted to leave the EU, demand for Irish passports has increased by 50 per cent, a sign that people feel dissatisfied by the constraints of geographically determined citizenship when they can no longer relate to their national identity.

In response, some governments see these changes as an opportunity to reconceptualise what we mean by a nation state.

The e-Residency offer

The primary actor in this disruption is Estonia, which leads the world in digital government. In 2015 they introduced an e-Residency, allowing anyone anywhere in the world to receive a government-issued digital identity. The e-Residency gives people access to digital public services and the ability to register and run online businesses from the country, in exactly the same way as someone born in Estonia. As of November 2017, over 27,000 people have applied to be Estonian e-Residents, and they have established over 4,200 companies. Estonia aims to have ten million virtual residents by 2025….

While Estonia is a sovereign nation using technology to redefine itself, there are movements taking advantage of decentralising technologies in a bid to do away with the nation state altogether. Bitnation is a blockchain-based technology which enables people to create and join virtual nations. This allows people to agree their own social contracts between one another, using smart contract technology, removing the need for governments as an administrator or mediator. Since it began in 2014, it has been offering traditional government services, such as notaries, dispute resolution, marriages and voting systems, without the need for a middleman.

As of November 2017, there are over 10,000 Bitnation citizens. …

As citizens, we may be able to educate our children in Finland, access healthcare from South Korea and run our businesses in New Zealand, all without having to leave the comfort of our homes. Governments may see this as means of financial sustainability in the longer term, generating income by selling such services to a global population instead of centralised taxation systems levied on a geographic population.

Such a model has been described as ‘nation-as-a-service’, and could mean countries offering different tiers of citizenship, with taxes based on the number of services used, or tier of citizenship chosen. This could also mean multiple citizenships, including of city-states, as well as nations….

This is the moment for governments to start taking the full implications of the digital age seriously. From electronic IDs and data management through to seamless access to services, citizens will only demand better digital services. Countries such as Azerbaijan, are already developing their own versions of the e-Residency. Large internet platforms such as Amazon are gearing up to replace entire government functions. If governments don’t grasp the nettle, they may find themselves left behind by technology and other countries which won’t wait around for them….(More)”.

Research reveals de-identified patient data can be re-identified


Vanessa Teague, Chris Culnane and Ben Rubinstein in PhysOrg: “In August 2016, Australia’s federal Department of Health published medical billing records of about 2.9 million Australians online. These records came from the Medicare Benefits Scheme (MBS) and the Pharmaceutical Benefits Scheme (PBS) containing 1 billion lines of historical health data from the records of around 10 per cent of the population.

These longitudinal records were de-identified, a process intended to prevent a person’s identity from being connected with information, and were made public on the government’s open data website as part of its policy on accessible public 

We found that patients can be re-identified, without decryption, through a process of linking the unencrypted parts of the  with known information about the individual.

Our findings replicate those of similar studies of other de-identified datasets:

  • A few mundane facts taken together often suffice to isolate an individual.
  • Some patients can be identified by name from publicly available information.
  • Decreasing the precision of the data, or perturbing it statistically, makes re-identification gradually harder at a substantial cost to utility.

The first step is examining a patient’s uniqueness according to medical procedures such as childbirth. Some individuals are unique given public information, and many patients are unique given a few basic facts, such as year of birth or the date a baby was delivered….

The second step is examining uniqueness according to the characteristics of commercial datasets we know of but cannot access directly. There are high uniqueness rates that would allow linking with a commercial pharmaceutical dataset, and with the billing data available to a bank. This means that ordinary people, not just the prominent ones, may be easily re-identifiable by their bank or insurance company…

These de-identification methods were bound to fail, because they were trying to achieve two inconsistent aims: the protection of individual privacy and publication of detailed individual records. De-identification is very unlikely to work for other rich datasets in the government’s care, like census data, tax records, mental health records, penal information and Centrelink data.

While the ambition of making more data more easily available to facilitate research, innovation and sound public policy is a good one, there is an important technical and procedural problem to solve: there is no good solution for publishing sensitive complex individual records that protects privacy without substantially degrading the usefulness of the data.

Some data can be safely published online, such as information about government, aggregations of large collections of material, or data that is differentially private. For sensitive, complex data about individuals, a much more controlled release in a secure research environment is a better solution. The Productivity Commission recommends a “trusted user” model, and techniques like dynamic consent also give patients greater control and visibility over their personal information….(More).

There’s more to evidence-based policies than data: why it matters for healthcare


 at The Conversation: “The big question is: how can countries strengthen their health systems to deliver accessible, affordable and equitable care when they are often under-financed and governed in complex ways?

One answer lies in governments developing policies and programmes that are informed by evidence of what works or doesn’t. This should include what we would call “traditional data”, but should also include a broader definition of evidence. This would mean including, for example, information from citizens and stakeholders as well as programme evaluations. In this way, policies can be made more relevant for the people they affect.

Globally there is an increasing appreciation for this sort of policymaking that relies of a broader definition of evidence. Countries such as South Africa, Ghana and Thailand provide good examples.

What is evidence?

Using evidence to inform the development of health care has grown out of the use of science to choose the best decisions. It is based on data being collected in a methodical way. This approach is useful but it can’t always be neatly applied to policymaking. There are several reasons for this.

The first is that there are many different types of evidence. Evidence is more than data, even though the terms are often used to mean the same thing. For example, there is statistical and administrative data, research evidence, citizen and stakeholder information as well as programme evaluations.

The challenge is that some of these are valued more than others. More often than not, statistical data is more valued in policymaking. But both researchers and policymakers must acknowledge that for policies to be sound and comprehensive, different phases of policymaking process would require different types of evidence.

Secondly, data-as-evidence is only one input into policymaking. Policymakers face a long list of pressures they must respond to, including time, resources, political obligations and unplanned events.

Researchers may push technically excellent solutions designed in research environments. But policymakers may have other priorities in mind: are the solutions being put to them practical and affordable?Policymakers also face the limitations of having to balance various constituents while straddling the constraints of the bureaucracies they work in.

Researchers must recognise that policymakers themselves are a source of evidence of what works or doesn’t. They are able to draw on their own experiences, those of their constituents, history and their contextual knowledge of the terrain.

What this boils down to is that for policies that are based on evidence to be effective, fewer ‘push/pull’ models of evidence need to be used. Instead the models where evidence is jointly fashioned should be employed.

This means that policymakers, researchers and other key actors (like health managers or communities) must come together as soon as a problem is identified. They must first understand each other’s ideas of evidence and come to a joint conclusion of what evidence would be appropriate for the solution.

In South Africa, for example, the Department of Environmental Affairshas developed a four-phase process to policymaking. In the first phase, researchers and policymakers come together to set the agenda and agree on the needed solution. Their joint decision is then reviewed before research is undertaken and interpreted together….(More)”.

Transitioning Towards a Knowledge Society: Qatar as a Case Study


Book by Julia Gremm, Julia Barth, Kaja J. Fietkiewicz and Wolfgang G. Stock: “The book offers a critical evaluation of Qatar’s path from oil- and gas-based industries to a knowledge-based economy. This book gives basic information about the region and the country, including the geographic and demographic data, the culture, the politics and the economy, the health care conditions and the education system. It introduces the concepts of knowledge society and knowledge-based development and adds factual details about Qatar by interpreting indicators of the development status. Subsequently, the research methods that underlie the study are described, which offers information on the eGovernment study analyzing the government-citizen relationship, higher education institutions and systems, its students and the students’ way into the labor market. This book has an audience with economists, sociologists, political scientists, geographers, information scientists and other researchers on the knowledge society, but also all researchers and practitioners interested in the Arab Oil States and their future….(More)”.