From privacy to partnership


Press Release: “The NHS and other public sector institutions should lead the way in piloting Privacy Enhancing Technologies (PETs) that could help unlock ‘lifesaving’ data without compromising privacy, a report by the Royal Society has said.

From privacy to partnership, the report from the UK’s national academy of science, highlights cases where better use of data could have significant public benefits – from cancer research to reaching net-zero carbon emissions.

PETs encompass a suite of tools, such as a new generation of encryption and synthetic data, that could help deliver those benefits by reducing risks inherent to data use. However, their adoption to date has been limited.

The report, which profiles public sector readiness for PETs, calls for public bodies to champion these technologies in partnership with small-and-medium-sized enterprises, and for the UK government to establish a ‘national strategy for the responsible use of PETs’.

This should support data use for public good through establishment of common standards for PETs, as well as bursaries and prizes to incentivise and accelerate development of a marketplace for their application.

Read the full report.

This builds on the Royal Society’s 2019 Protecting privacy in practice (PDF). Following rapid developments in the field, the new report aims to establish principles and standards for the responsible use of PETs. This includes ensuring PETs are not limited to private sector organisations but are also used in cross-sector data partnerships for collaborative analysis to achieve wider public benefit.

 Healthcare is a key use case identified by the report. Medical technology advances, coupled with comprehensive electronic patient records in the NHS and a strong academic research base, mean “the UK is well positioned to deliver timely and impactful health research and its translation to offer more effective treatments, track and prevent public health risks, utilising health data to improve and save lives,” the report said…(More)”.

The Health of Democracies During the Pandemic: Results from a Randomized Survey Experiment


Paper by Marcella Alsan et al: “Concerns have been raised about the “demise of democracy”, possibly accelerated by pandemic-related restrictions. Using a survey experiment involving 8,206 respondents from five Western democracies, we find that subjects randomly exposed to information regarding civil liberties infringements undertaken by China and South Korea to contain COVID-19 became less willing to sacrifice rights and more worried about their long-term-erosion. However, our treatment did not increase support for democratic procedures more generally, despite our prior evidence that pandemic-related health risks diminished such support. These results suggest that the start of the COVID-19 crisis was a particularly vulnerable time for democracies…(More)”.

The Doctor Who Wasn’t There: Technology, History, and the Limits of Telehealth


Book by Jeremy A. Greene: “The Doctor Who Wasn’t There traces the long arc of enthusiasm for—and skepticism of—electronic media in health and medicine. Over the past century, a series of new technologies promised to democratize access to healthcare. From the humble telephone to the connected smartphone, from FM radio to wireless wearables, from cable television to the “electronic brains” of networked mainframe computers: each new platform has promised a radical reformation of the healthcare landscape. With equal attention to the history of technology, the history of medicine, and the politics and economies of American healthcare, physician and historian Jeremy A. Greene explores the role that electronic media play, for better and for worse, in the past, present, and future of our health.

Today’s telehealth devices are far more sophisticated than the hook-and-ringer telephones of the 1920s, the radios that broadcasted health data in the 1940s, the closed-circuit televisions that enabled telemedicine in the 1950s, or the online systems that created electronic medical records in the 1960s. But the ethical, economic, and logistical concerns they raise are prefigured in the past, as are the gaps between what was promised and what was delivered. Each of these platforms also produced subtle transformations in health and healthcare that we have learned to forget, displaced by promises of ever newer forms of communication that took their place. 

Illuminating the social and technical contexts in which electronic medicine has been conceived and put into practice, Greene’s history shows the urgent stakes, then and now, for those who would seek in new media the means to build a more equitable future for American healthcare….(More)”.

Why we need to unlock health data to beat disease worldwide


Article by Takanori Fujita, Masayasu Okajima and Hiroyuki Miuchi: “The digital revolution in healthcare offers the promise of better health and longer lives for people around the world. New digital tools can help doctors and patients to predict, prevent and treat disease, opening the door to personalised medical care that is cost-efficient and highly effective.

Digitization across the entire healthcare sector — from hospital operations to the production of medical devices, vaccines and other pharmaceuticals — stands to benefit everyone, through improved efficiency at medical institutions, better care at home and stronger support for everyday health and wellbeing.

The essential ingredient in digital healthcare is data. Developers and service providers need health data to build and deploy effective solutions. So far, unfortunately, the potential benefits of digital healthcare have been under-realized, in large part because of data chokepoints…

It should go without saying that the ‘reward’ for sharing data is better health. Lifestyle-related diseases, which are more prevalent in ageing populations, often do not become symptomatic until they have progressed to a dangerous level. That makes timely monitoring and assessment crucial. In a world where people are living longer and longer— ‘100-year societies,’ as we say in Japan — data-enabled early detection is perhaps the best tool we have to stave off age-related health crises.

Abstract arguments, however, rarely convince people to consent to sharing personal data. Special efforts are needed to show specific, individual benefits and make people feel a tangible sense of control.

In Japan, the city of Arao is conducting an experiment to enable patients and their families to check information on electronic health records (EHRs) using their smartphones when they visit affiliated hospitals. Test results, prescribed medications and other information can be monitored. The system is expected to reduce costs for municipalities that are struggling to fund medical and nursing care for growing elderly populations. The money saved can be diverted to programs that help people live healthier lives, creating a virtuous cycle….Digital healthcare isn’t just a matter for patients and medical professionals. Lifestyle data with implications for health is broadly distributed, so the non-medical field needs to be involved as well. Takamatsu, another Japanese city, is attempting to address this difficult issue by building a common data collaboration infrastructure for the public and private sectors.

SOMPO Light Vortex, a subsidiary of SOMPO Holdings, a Japanese insurance and nursing care company, has created an app for Covid-19 vaccination certification and personal health records (PHRs) that is connected to Takamatsu’s municipal data infrastructure. Combining a range of data on health and lifestyle patterns in a trusted platform overseen by local government is expected to offer benefits in areas ranging from disaster prevention to wellbeing…(More)”.

Data Solidarity


White Paper by Barbara Prainsack et al: “…The concept of solidarity, applied to data governance, offers an approach to address the issues raised above. Solidarity-based data governance (in short: data solidarity) seeks to increase collective control, oversight and ownership over digital data and resources. In today’s societies, digital technologies and practices are entrenched in every domain of practice. Even people who are not heavy users of digital technologies contribute to the benefits that emerge from digital data and practice. They do so when data about their bodies and behaviours are captured by public institutions and companies, and as members of societies that make available the technical, social and knowledge infrastructures necessary for the generation and analysis of digital data. In short, in digital societies, all people contribute to the benefits resulting from digital data and practice. Similarly, everyone bears risks – not only that their privacy will be infringed, but also that they or other people will be discriminated against, profiled, or otherwise harmed as a result of data analytics and other data practices in fields as diverse as policing, administration and insurance. Against this backdrop, approaches that seek to increase the control of individuals over the use of their data remain important, but they are not sufficient to address the issues emerging from political and economic constellations.

Data solidarity’s core premise is that the benefits and the risks of digital practices need to be borne by societies collectively. The structure of this White Paper is as follows: After sketching our understanding of data solidarity and what a governance framework based on it should entail (Section 2), we discuss how data solidarity is different from related concepts (Section 3). We then give an overview of manifestations of data solidarity in existing legal frameworks (Section 4). Following this, we elaborate on policy instruments that can realise the proposed solidarity-based data governance framework (Section 5). We then discuss other ways to enable and improve data solidarity (Section 6). We end by providing specific recommendations to policymakers and other actors (Section 7) and presenting a brief research agenda for the immediate and near future (Section 8)…(More)“.

Navigating the Crisis: How Governments Used Intelligence for Decision Making During the COVID-19 Pandemic


Report by Geoff Mulgan, Oliver Marsh, and Anina Henggeler: “…examines how governments — and the societies around them — mobilised intelligence to handle the COVID-19 pandemic and its effects. It also makes recommendations as to how they could improve their ability to organise intelligence for future challenges of all kinds, from pandemics to climate change.

The study draws on dozens of interviews with senior officials and others in many countries including Estonia, Australia, New Zealand, Germany, Finland, USA, Chile, Canada, Portugal, Taiwan, Singapore, India, Bangladesh, UAE, South Korea and the UK, as well as the European Commission and UN agencies — along with roundtables and literature analysis.

The pandemic was an unprecedented event in its global impacts and in the scale of government responses. It required a myriad of policy decisions: about testing, lockdowns, masks, school closures, visiting rules at care homes and vaccinations.

Our interest is in what contributed to those decisions, and we define intelligence broadly to include data, evidence, models, tacit knowledge, foresight and creativity and innovation — all the means that can help governments make better decisions, particularly under conditions of stress and uncertainty.

Each type of intelligence played an important role. Governments needed health as well as non-health data to help understand how the virus was spreading in real time and its impacts. They needed models — for example, to judge if their hospitals were at risk of being overrun. They needed evidence — for example on whether enforcing mask-wearing would be effective. And they needed to tap into the knowledge of citizens and frontline staff quickly to spot potential problems and frictions.

Most governments had to improvise new methods of organising that intelligence, particularly as they grappled not just with the immediate health challenges, but also with the knock-on challenges to economies, communities, mental health, school systems and sectors such as hospitality.

As we show there was extraordinary innovation globally around the gathering of data, from mass serological testing to analysis of sewage, from mobilising mobile phone data to citizen generated data on symptoms. There was an equally impressive explosion of research and evidence; and innovative approaches to problem solving and creativity, from vaccine development to Personal Protective Equipment (PPE).

However, we also point to problems:

  • Imbalances in terms of what was attended to — with physical health given much more attention than mental health or educational impacts in models and data, which was understandable in the early phases of the crisis but more problematic later on as trade-offs had to be managed
  • Imbalances in different kinds of expertise in scientific advice and influence, for instance in who got to sit on and be heard in expert advisory committees
  • Very varied ability of countries to share information and data between tiers of government
  • Very varied ability to mobilise key sources, such as commercial data, and varied use of intelligence from outside sources, such as from other countries or from civic groups,
  • Even when there were strong sources of advice and evidence, weak capacities to synthesise multiple kinds of intelligence at the core of governments…(More)”.

The Dangers of Systems Illiteracy


Review by Carol Dumaine: “In 1918, as the Great War was coming to an end after four bloody years of brutal conflict, an influenza pandemic began to ravage societies around the globe. While in Paris negotiating the terms of the peace agreement in the spring of 1919, evidence indicates that US president Woodrow Wilson was stricken with the flu. 

Wilson, who had been intransigent in insisting on just peace terms for the defeated nations (what he called “peace without victory”), underwent a profound change of mental state that his personal physician and closest advisors attributed to his illness. While sick, Wilson suddenly agreed to all the terms he had previously adamantly rejected and approved a treaty that made onerous demands of Germany. 

Wilson’s reversal left Germans embittered and his own advisors disillusioned. Historian John M. Barry, who recounts this episode in his book about the 1918 pandemic, The Great Influenza, observes that most historians agree “that the harshness toward Germany of the Paris peace treaty helped create the economic hardship, nationalistic reaction, and political chaos that fostered the rise of Hitler.” 

This anecdote is a vivid illustration of how a public health disaster can intersect with world affairs, potentially sowing the seeds for a future of war. Converging crises can leave societies with too little time to regroup, breaking down resilience and capacities for governance. Barry concludes from his research into the 1918 pandemic that to forestall this loss of authority—and perhaps to avoid future, unforeseen repercussions—government leaders should share the unvarnished facts and evolving knowledge of a situation. 

Society is ultimately based on trust; during the flu pandemic, “as trust broke down, people became alienated not only from those in authority, but from each other.” Barry continues, “Those in authority must retain the public’s trust. The way to do that is to distort nothing, to put the best face on nothing, to try to manipulate no one.”

Charles Weiss makes a similar argument in his new book, The Survival Nexus: Science, Technology, and World Affairs. Weiss contends that the preventable human and economic losses of the COVID-19 pandemic were the result of politicians avoiding harsh truths: “Political leaders suppressed evidence of virus spread, downplayed the importance of the epidemic and the need to observe measures to protect the health of the population, ignored the opinions of local experts, and publicized bogus ‘cures’—all to avoid economic damage and public panic, but equally importantly to consolidate political power and to show themselves as strong leaders who were firmly in control.” …(More)”.

Abandoned: the human cost of neurotechnology failure


Article by Liam Drew: “…Hundreds of thousands of people benefit from implanted neurotechnology every day. Among the most common devices are spinal-cord stimulators, first commercialized in 1968, that help to ease chronic pain. Cochlear implants that provide a sense of hearing, and deep-brain stimulation (DBS) systems that quell the debilitating tremor of Parkinson’s disease, are also established therapies.

Encouraged by these successes, and buoyed by advances in computing and engineering, researchers are trying to develop evermore sophisticated devices for numerous other neurological and psychiatric conditions. Rather than simply stimulating the brain, spinal cord or peripheral nerves, some devices now monitor and respond to neural activity.

For example, in 2013, the US Food and Drug Administration approved a closed-loop system for people with epilepsy. The device detects signs of neural activity that could indicate a seizure and stimulates the brain to suppress it. Some researchers are aiming to treat depression by creating analogous devices that can track signals related to mood. And systems that allow people who have quadriplegia to control computers and prosthetic limbs using only their thoughts are also in development and attracting substantial funding.

The market for neurotechnology is predicted to expand by around 75% by 2026, to US$17.1 billion. But as commercial investment grows, so too do the instances of neurotechnology companies giving up on products or going out of business, abandoning the people who have come to depend on their devices.

Shortly after the demise of ATI, a company called Nuvectra, which was based in Plano, Texas, filed for bankruptcy in 2019. Its device — a new kind of spinal-cord stimulator for chronic pain — had been implanted in at least 3,000 people. In 2020, artificial-vision company Second Sight, in Sylmar, California, laid off most of its workforce, ending support for the 350 or so people who were using its much heralded retinal implant to see. And in June, another manufacturer of spinal-cord stimulators — Stimwave in Pompano Beach, Florida — filed for bankruptcy. The firm has been bought by a credit-management company and is now embroiled in a legal battle with its former chief executive. Thousands of people with the stimulator, and their physicians, are watching on in the hope that the company will continue to operate.

When the makers of implanted devices go under, the implants themselves are typically left in place — surgery to remove them is often too expensive or risky, or simply deemed unnecessary. But without ongoing technical support from the manufacturer, it is only a matter of time before the programming needs to be adjusted or a snagged wire or depleted battery renders the implant unusable.

People are then left searching for another way to manage their condition, but with the added difficulty of a non-functional implant that can be an obstacle both to medical imaging and future implants. For some people, including Möllmann-Bohle, no clear alternative exists.

“It’s a systemic problem,” says Jennifer French, executive director of Neurotech Network, a patient advocacy and support organization in St. Petersburg, Florida. “It goes all the way back to clinical trials, and I don’t think it’s received enough attention.”…(More)”.

The Wireless Body


Article by Jeremy Greene: “Nearly half the US adult population will pass out at some point in their lives. Doctors call this “syncope,” and it is bread-and-butter practice for any emergency room or urgent care clinic. While most cases are benign—a symptom of dehydration or mistimed medication—syncope can also be a sign of something gone terribly wrong. It may be a symptom of a heart attack, a blood clot in the lungs, an embolus to the arteries supplying the brain, or a life-threatening arrhythmia. After a series of tests ruling out the worst, most patients go home without incident. Many of them also go home with a Holter monitor. 

The Holter monitor is a device about the size of a pack of cards that records the electrical activity of the heart over the course of a day or more. Since its invention more than half a century ago, it has become such a common object in clinical medicine that few pause to consider its origins. But, as the makers of new Wi-Fi and cloud-enabled devices, smartphone apps, and other “wearable” technologies claim to be revolutionizing the world of preventive health care, there is much to learn from the history of this older instrument of medical surveillance…(More)”.

Varieties of Mobility Measures: Comparing Survey and Mobile Phone Data during the COVID-19 Pandemic 


Paper by Fabian Kalleitner, David W Schiestl, Georg Heiler: “Human mobility has become a major variable of interest during the COVID-19 pandemic and central to policy decisions all around the world. To measure individual mobility, research relies on a variety of indicators that commonly stem from two main data sources: survey self-reports and behavioral mobility data from mobile phones. However, little is known about how mobility from survey self-reports relates to popular mobility estimates using data from the Global System for Mobile Communications (GSM) and the Global Positioning System (GPS). Spanning March 2020 until April 2021, this study compares self-reported mobility from a panel survey in Austria to aggregated mobility estimates utilizing (1) GSM data and (2) Google’s GPS-based Community Mobility Reports. Our analyses show that correlations in mobility changes over time are high, both in general and when comparing subgroups by age, gender, and mobility category. However, while these trends are similar, the size of relative mobility changes over time differs substantially between different mobility estimates. Overall, while our findings suggest that these mobility estimates manage to capture similar latent variables, especially when focusing on changes in mobility over time, researchers should be aware of the specific form of mobility different data sources capture….(More)”.