Hospitals Give Tech Giants Access to Detailed Medical Records

Curated on Posted on by Stefaan Verhulst

Melanie Evans at the Wall Street Journal: “Hospitals have granted Microsoft Corp., International Business Machines and Amazon.com Inc. the ability to access identifiable patient information under deals to crunch millions of health records, the latest examples of hospitals’ growing influence in the data economy.

The breadth of access wasn’t always spelled out by hospitals and tech giants when the deals were struck.

The scope of data sharing in these and other recently reported agreements reveals a powerful new role that hospitals play—as brokers to technology companies racing into the $3 trillion health-care sector. Rapid digitization of health records and privacy laws enabling companies to swap patient data have positioned hospitals as a primary arbiter of how such sensitive data is shared. 

“Hospitals are massive containers of patient data,” said Lisa Bari, a consultant and former lead for health information technology for the Centers for Medicare and Medicaid Services Innovation Center. 

Hospitals can share patient data as long as they follow federal privacy laws, which contain limited consumer protections, she said. “The data belongs to whoever has it.”…

Digitizing patients’ medical histories, laboratory results and diagnoses has created a booming market in which tech giants are looking to store and crunch data, with potential for groundbreaking discoveries and lucrative products.

There is no indication of wrongdoing in the deals. Officials at the companies and hospitals say they have safeguards to protect patients. Hospitals control data, with privacy training and close tracking of tech employees with access, they said. Health data can’t be combined independently with other data by tech companies….(More)”.

Information literacy in the age of algorithms

Curated on Posted on by Stefaan Verhulst

Report by Alison J. Head, Ph.D., Barbara Fister, Margy MacMillan: “…Three sets of questions guided this report’s inquiry:

  1. What is the nature of our current information environment, and how has it influenced how we access, evaluate, and create knowledge today? What do findings from a decade of PIL research tell us about the information skills and habits students will need for the future?
  2. How aware are current students of the algorithms that filter and shape the news and information they encounter daily? What
    concerns do they have about how automated decision-making systems may influence us, divide us, and deepen inequalities?
  3. What must higher education do to prepare students to understand the new media landscape so they will be able to participate in sharing and creating information responsibly in a changing and challenged world?
    To investigate these questions, we draw on qualitative data that PIL researchers collected from student focus groups and faculty interviews during fall 2019 at eight U.S. colleges and universities. Findings from a sample of 103 students and 37 professors reveal levels of awareness and concerns about the age of algorithms on college campuses. They are presented as research takeaways….(More)”.

Belgium’s experiment in permanent forms of deliberative democracy

Curated on Posted on by Stefaan Verhulst

Article by Min Reuchamps: In December 2019, the parliament of the Region of Brussels in Belgium amended its internal regulations to allow the formation of ‘deliberative committees’ composed of a mixture of members of the Regional Parliament and randomly selected citizens. This initiative follows innovative experiences in the German-speaking Community of Belgium, known as Ostbelgien, and the city of Madrid in establishing permanent forums of deliberative democracy earlier in 2019. Ostbelgien is now experiencing its first cycle of deliberations, whereas the Madrid forum has been short-lived after having been cancelled, after two meetings, by the new governing coalition of the city.

The experimentation in establishing permanent forums for direct citizen involvement constitutes an advance from hitherto deliberative processes which were one-off experiments, i.e. non-permanent procedures. The relatively large size of the Brussels Region, with over 1 200 000 inhabitants, means that the lessons will be key in understanding the opportunities and risks of ‘deliberative committees’ and their potential scalability….

Under the new rules, the Regional Parliament can setup a parliamentary committee composed of 15 (12 in the Cocof) parliamentarians and 45 (36 in the Cocof) citizens to draft recommendations on a given issue. Any inhabitant in Brussels who has attained 16 years of age has the chance to have a direct say in matters falling under the jurisdiction of the Brussels Regional Parliament and the Cocof. The citizen representatives will be drawn by lot in two steps:

  • A first draw among the whole population, so that every inhabitant has the same chance to be invited via a formal invitation letter from the Parliament;
  • A second draw among all the persons who have responded positively to the invitation by means of a sampling method following criteria to ensure a diverse and representative selection, at least in terms of gender, age, official languages of the Brussels-Capital Region, geographical distribution and level of education.

The participating parliamentarians will be the members of the standing parliamentary committee that covers the topic under deliberation. In the regional parliament, each standing committee is made up of 15 members (including both Dutch- and French-speakers), and in the Cocof Parliament, each standing committee is made of 12 members (only French-speakers)….(More)”.

The 2020 Edelman Trust Barometer

Curated on Posted on by Stefaan Verhulst

Edelman: “The 2020 Edelman Trust Barometer reveals that despite a strong global economy and near full employment, none of the four societal institutions that the study measures—government, business, NGOs and media—is trusted. The cause of this paradox can be found in people’s fears about the future and their role in it, which are a wake-up call for our institutions to embrace a new way of effectively building trust: balancing competence with ethical behavior…

Since Edelman began measuring trust 20 years ago, it has been spurred by economic growth. This continues in Asia and the Middle East, but not in developed markets, where income inequality is now the more important factor. A majority of respondents in every developed market do not believe they will be better off in five years’ time, and more than half of respondents globally believe that capitalism in its current form is now doing more harm than good in the world. The result is a world of two different trust realities. The informed public—wealthier, more educated, and frequent consumers of news—remain far more trusting of every institution than the mass population. In a majority of markets, less than half of the mass population trust their institutions to do what is right. There are now a record eight markets showing all-time-high gaps between the two audiences—an alarming trust inequality…

Distrust is being driven by a growing sense of inequity and unfairness in the system. The perception is that institutions increasingly serve the interests of the few over everyone. Government, more than any institution, is seen as least fair; 57 percent of the general population say government serves the interest of only the few, while 30 percent say government serves the interests of everyone….

Against the backdrop of growing cynicism around capitalism and the fairness of our current economic systems are deep-seated fears about the future. Specifically, 83 percent of employees say they fear losing their job, attributing it to the gig economy, a looming recession, a lack of skills, cheaper foreign competitors, immigrants who will work for less, automation, or jobs being moved to other countries….(More)”.

The Handbook of Public Sector Communication

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Book edited by Vilma Luoma-aho and María José Canel: “Research into public sector communication investigates the interaction between public and governmental entities and citizens within their sphere of influence. Today’s public sector organizations are operating in environments where people receive their information from multiple sources. Although modern research demonstrates the immense impact public entities have on democracy and societal welfare, communication in this context is often overlooked. Public sector organizations need to develop “communicative intelligence” in balancing their institutional agendas and aims of public engagement. The Handbook of Public Sector Communication is the first comprehensive volume to explore the field. This timely, innovative volume examines the societal role, environment, goals, practices, and development of public sector strategic communication.

International in scope, this handbook describes and analyzes the contexts, policies, issues, and questions that shape public sector communication. An interdisciplinary team of leading experts discusses diverse subjects of rising importance to public sector, government, and political communication. Topics include social exchange relationships, crisis communication, citizen expectations, measuring and evaluating media, diversity and inclusion, and more. Providing current research and global perspectives, this important resource:

  • Addresses the questions public sector communicators face today
  • Summarizes the current state of public sector communication worldwide
  • Clarifies contemporary trends and practices including mediatization, citizen engagement, and change and expectation management
  • Addresses global challenges and crises such as corruption and bureaucratic roadblocks
  • Provides a framework for measuring communication effectiveness…(More)”.

Improving public policy and administration: exploring the potential of design

Curated on Posted on by Stefaan Verhulst

Paper by Arwin van Buuren et al: “In recent years, design approaches to policymaking have gained popularity among policymakers. However, a critical reflection on their added value and on how contemporary ‘design-thinking’ approaches relates to the classical idea of public administration as a design science, is still lacking. This introductory paper reflects upon the use of design approaches in public administration. We delve into the more traditional ideas of design as launched by Simon and policy design, but also into the present-day design wave, stemming from traditional design sciences. Based upon this we distinguish between three ideal-type approaches of design currently characterising the discipline: design as optimisation, design as exploration and design as co-creation. More rigorous empirical analyses of applications of these approaches is necessary to further develop public administration as a design science. We reflect upon the question of how a more designerly way of thinking can help to improve public administration and public policy….(More)”.

Social media firms 'should hand over data amid suicide risk'

Curated on Posted on by Stefaan Verhulst

Denis Campbell at the Guardian: “Social media firms such as Facebook and Instagram should be forced to hand over data about who their users are and why they use the sites to reduce suicide among children and young people, psychiatrists have said.

The call from the Royal College of Psychiatrists comes as ministers finalise plans to crack down on issues caused by people viewing unsavoury material and messages online.

The college, which represents the UK’s 18,000 psychiatrists, wants the government to make social media platforms hand over the data to academics so that they can study what sort of content users are viewing.

“We will never understand the risks and benefits of social media use unless the likes of Twitter, Facebook and Instagram share their data with researchers,” said Dr Bernadka Dubicka, chair of the college’s child and adolescent mental health faculty. “Their research will help shine a light on how young people are interacting with social media, not just how much time they spend online.”

Data passed to academics would show the type of material viewed and how long users were spending on such platforms but would be anonymous, the college said.

The government plans to set up a new online safety regulator and the college says it should be given the power to compel firms to hand over data. It is also calling for the forthcoming 2% “turnover tax” on social media companies’ income to be extended so that it includes their turnover internationally, not from just the UK.

“Self-regulation is not working. It is time for government to step up and take decisive action to hold social media companies to account for escalating harmful content to vulnerable children and young people,” said Dubicka.

The college’s demands come amid growing concern that young people are being harmed by material that, for example, encourages self-harm, suicide and eating disorders. They are included in a new position statement on technology use and the mental health of children and young people.

NHS England challenged firms to hand over the sort of information that the college is suggesting. Claire Murdoch, its national director for mental health, said that action was needed “to rein in potentially misleading or harmful online content and behaviours”.

She said: “If these tech giants really want to be a force for good, put a premium on users’ wellbeing and take their responsibilities seriously, then they should do all they can to help researchers better understand how they operate and the risks posed. Until then, they cannot confidently say whether the good outweighs the bad.”

The demands have also been backed by Ian Russell, who has become a campaigner against social media harm since his 14-year-old daughter Molly killed herself in November 2017….(More)”.

Global problems need social science

Curated on Posted on by Stefaan Verhulst

Hetan Shah at Nature: “Without human insights, data and the hard sciences will not meet the challenges of the next decade…

I worry about the fact that the call prioritized science and technology over the humanities and social sciences. Governments must make sure they also tap into that expertise, or they will fail to tackle the challenges of this decade.

For example, we cannot improve global health if we take only a narrow medical view. Epidemics are social as well as biological phenomena. Anthropologists such as Melissa Leach at the University of Sussex in Brighton, UK, played an important part in curbing the West African Ebola epidemic with proposals to substitute risky burial rituals with safer ones, rather than trying to eliminate such rituals altogether.

Treatments for mental health have made insufficient progress. Advances will depend, in part, on a better understanding of how social context influences whether treatment succeeds. Similar arguments apply to the problem of antimicrobial resistance and antibiotic overuse.

Environmental issues are not just technical challenges that can be solved with a new invention. To tackle climate change we will need insight from psychology and sociology. Scientific and technological innovations are necessary, but enabling them to make an impact requires an understanding of how people adapt and change their behaviour. That will probably require new narratives — the purview of rhetoric, literature, philosophy and even theology.

Poverty and inequality call even more obviously for expertise beyond science and maths. The UK Economic and Social Research Council has recognized that poor productivity in the country is a big problem, and is investing up to £32.4 million (US$42 million) in a new Productivity Institute in an effort understand the causes and potential remedies.

Policy that touches on national and geographical identity also needs scholarly input. What is the rise of ‘Englishness’? How do we live together in a community of diverse races and religions? How is migration understood and experienced? These intangibles have real-world consequences, as demonstrated by the Brexit vote and ongoing discussions about whether the United Kingdom has a future as a united kingdom. It will take the work of historians, social psychologists and political scientists to help shed light on these questions. I could go on: fighting against misinformation; devising ethical frameworks for artificial intelligence. These are issues that cannot be tackled with better science alone….(More)”.

Human-centred policy? Blending ‘big data’ and ‘thick data’ in national policy

Curated on Posted on by Stefaan Verhulst

Policy Lab (UK): “….Compared with quantitative data, ethnography creates different forms of data – what anthropologists call ‘thick data’. Complex social problems benefit from insights beyond linear, standardised evidence and this is where thick data shows its worth. In Policy Lab we have generated ethnographic films and analysis to sit alongside quantitative data, helping policy-makers to build a rich picture of current circumstances. 

On the other hand, much has been written about big data – data generated through digital interactions – whether it be traditional ledgers and spreadsheets or emerging use of artificial intelligence and the internet of things.  The ever-growing zettabytes of data can reveal a lot, providing a (sometimes real time) digital trail capturing and aggregating our individual choices, preferences, behaviours and actions.  

Much hyped, this quantitative data has great potential to inform future policy, but must be handled ethically, and also requires careful preparation and analysis to avoid biases and false assumptions creeping in. Three issues we have seen in our projects relate to:

  • partial data, for example not having data on people who are not digitally active, biasing the sample
  • the time-consuming challenge of cleaning up data, in a political context where time is often of the essence
  • the lack of data interoperability, where different localities/organisations capture different metrics

Through a number of Policy Lab projects we have used big data to see the big picture before then using thick data to zoom in to the detail of people’s lived experience.  Whereas big data can give us cumulative evidence at a macro, often systemic level, thick data provides insights at an individual or group level.  We have found the blending of ‘big data’ and ‘thick data’ – to be the sweet spot. 

This is a diagram of Policy Lab's model for combining big data and thick data.
Policy Lab’s model for combining big data and thick data (2020)

Policy Lab’s work develops data and insights into ideas for potential policy intervention which we can start to test as prototypes with real people. These operate at the ‘meso’ level (in the middle of the diagram above), informed by both the thick data from individual experiences and the big data at a population or national level. We have written a lot about prototyping for policy and are continuing to explore how you prototype a policy compared to say a digital service….(More)”.

Predictive Policing Theory

Curated on Posted on by Stefaan Verhulst

Paper by Andrew Guthrie Ferguson: “Predictive policing is changing law enforcement. New place-based predictive analytic technologies allow police to predict where and when a crime might occur. Data-driven insights have been operationalized into concrete decisions about police priorities and resource allocation. In the last few years, place-based predictive policing has spread quickly across the nation, offering police administrators the ability to identify higher crime locations, to restructure patrol routes, and to develop crime suppression strategies based on the new data.

This chapter suggests that the debate about technology is better thought about as a choice of policing theory. In other words, when purchasing a particular predictive technology, police should be doing more than simply choosing the most sophisticated predictive model; instead they must first make a decision about the type of policing response that makes sense in their community. Foundational questions about whether we want police officers to be agents of social control, civic problem-solvers, or community partners lie at the heart of any choice of which predictive technology might work best for any given jurisdiction.

This chapter then examines predictive policing technology as a choice about policing theory and how the purchase of a particular predictive tool becomes – intentionally or unintentionally – a statement about police role. Interestingly, these strategic choices map on to existing policing theories. Three of the traditional policing philosophies – hot spot policing , problem-oriented policing, and community-based policing have loose parallels with new place-based predictive policing technologies like PredPol, Risk Terrain Modeling (RTM), and HunchLab. This chapter discusses these leading predictive policing technologies as illustrative examples of how police can choose between prioritizing additional police presence, targeting environmental vulnerabilities, and/or establishing a community problem-solving approach as a different means of achieving crime reduction….(More)”.