Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

Curated on Posted on by Stefaan Verhulst

Paper by Jennifer Viberg Johansson: “Discrete Choice Experiment (DCE) is a well-established technique to elicit individual preferences, but it has rarely been used to elicit governance preferences for health data sharing.

The aim of this article was to describe the process of identifying attributes for a DCE study aiming to elicit preferences of citizens in Sweden, Iceland and the UK for governance mechanisms for digitally sharing different kinds of health data in different contexts.

A three-step approach was utilised to inform the attribute and level selection: 1) Attribute identification, 2) Attribute development and 3) Attribute refinement. First, we developed an initial set of potential attributes from a literature review and a workshop with experts. To further develop attributes, focus group discussions with citizens (n = 13), ranking exercises among focus group participants (n = 48) and expert interviews (n = 18) were performed. Thereafter, attributes were refined using group discussion (n = 3) with experts as well as cognitive interviews with citizens (n = 11).

The results led to the selection of seven attributes for further development: 1) level of identification, 2) the purpose of data use, 3) type of information, 4) consent, 5) new data user, 6) collector and 7) the oversight of data sharing. Differences were found between countries regarding the order of top three attributes. The process outlined participants’ conceptualisation of the chosen attributes, and what we learned for our attribute development phase.

This study demonstrates a process for selection of attributes for a (multi-country) DCE involving three stages: Attribute identification, Attribute development and Attribute refinement. This study can contribute to improve the ethical aspects and good practice of this phase in DCE studies. Specifically, it can contribute to the development of governance mechanisms in the digital world, where people’s health data are shared for multiple purposes….(More)”.

Scientific publishing’s new weapon for the next crisis: the rapid correction

Curated on Posted on by Stefaan Verhulst

Gideon Meyerowitz-Katz and James Heathers at STATNews: “If evidence of errors does emerge, the process for correcting or withdrawing a paper tends to be alarmingly long. Late last year, for example, David Cox, the IBM director of the MIT-IBM Watson AI Lab, discovered that his name was included as an author on two papers he had never written. After he wrote to the journals involved, it took almost three months for them to remove his name and the papers themselves. In cases of large-scale research fraud, correction times can be measured in years.

Imagine now that the issue with a manuscript is not a simple matter of retracting a fraudulent paper, but a more complex methodological or statistical problem that undercuts the study’s conclusions. In this context, requests for clarification — or retraction — can languish for years. The process can outlast both the tenure of the responsible editor, resetting the clock on the entire ordeal, or the journal itself can cease publication, leaving an erroneous article in the public domain without oversight, forever….

This situation must change, and change quickly. Any crisis that requires scientific information in a hurry will produce hurried science, and hurried science often includes miscalculated analyses, poor experimental design, inappropriate statistical models, impossible numbers, or even fraud. Having the agility to produce and publicize work like this without having the ability to correct it just as quickly is a curiously persistent oversight in the global scientific enterprise. If corrections occur only long after the research has already been used to treat people across the world, what use are they at all?

There are some small steps in the right direction. The open-source website PubPeer aggregates formal scientific criticism, and when shoddy research makes it into the literature, hordes of critics may leave comments and questions on the site within hours. Twitter, likewise, is often abuzz with spectacular scientific critiques almost as soon as studies go up online.

But these volunteer efforts are not enough. Even when errors are glaring and obvious, the median response from academic journals is to deal with them grudgingly or not at all. Academia in general takes a faintly disapproving tone of crowd-sourced error correction, ignoring the fact that it is often the only mechanism that exists to do this vital work.

Scientific publishing needs to stop treating error-checking as a slightly inconvenient side note and make it a core part of academic research. In a perfect world, entire departmental sections would be dedicated to making sure that published research is correct and reliable. But even a few positions would be a fine start. Young researchers could be given kudos not just for every citation in their Google scholar profile but also for every post-publication review they undertake….(More)”

Politics, Public Goods, and Corporate Nudging in the HTTP/2 Standardization Process

Curated on Posted on by Stefaan Verhulst

Paper by Sylvia E. Peacock: “The goal is to map out some policy problems attached to using a club good approach instead of a public good approach to manage our internet protocols, specifically the HTTP (Hypertext Transfer Protocol). Behavioral and information economics theory are used to evaluate the standardization process of our current generation HTTP/2 (2.0). The HTTP update under scrutiny is a recently released HTTP/2 version based on Google’s SPDY, which introduces several company-specific and best practice applications, side by side. A content analysis of email discussions extracted from a publicly accessible IETF (Internet Engineering Task Force) email server shows how the club good approach of the working group leads to an underperformance in the outcomes of the standardization process. An important conclusion is that in some areas of the IETF, standardization activities may need to include public consultations, crowdsourced volunteers, or an official call for public participation to increase public oversight and more democratically manage our intangible public goods….(More)”.

Examining the Intersection of Behavioral Science and Advocacy

Curated on Posted on by Stefaan Verhulst

Introduction to Special Collection of the Behavioral Scientist by Cintia Hinojosa and Evan Nesterak: “Over the past year, everyone’s lives have been touched by issues that intersect science and advocacy—the pandemic, climate change, police violence, voting, protests, the list goes on. 

These issues compel us, as a society and individuals, toward understanding. We collect new data, design experiments, test our theories. They also inspire us to examine our personal beliefs and values, our roles and responsibilities as individuals within society. 

Perhaps no one feels these forces more than social and behavioral scientists. As members of fields dedicated to the study of social and behavioral phenomena, they are in the unique position of understanding these issues from a scientific perspective, while also navigating their inevitable personal impact. This dynamic brings up questions about the role of scientists in a changing world. To what extent should they engage in advocacy or activism on social and political issues? Should they be impartial investigators, active advocates, something in between? 

t also raises other questions, like does taking a public stance on an issue affect scientific integrity? How should scientists interact with those setting policies? What happens when the lines between an evidence-based stance and a political position become blurred? What should scientists do when science itself becomes a partisan issue? 

To learn more about how social and behavioral scientists are navigating this terrain, we put out a call inviting them to share their ideas, observations, personal reflections, and the questions they’re grappling with. We gave them 100-250 words to share what was on their mind. Not easy for such a complex and consequential topic.

The responses, collected and curated below, revealed a number of themes, which we’ve organized into two parts….(More)”.

Sandwich Strategy

Curated on Posted on by Stefaan Verhulst

Article by the Accountability Research Center: “The “sandwich strategy” describes an interactive process in which reformers in government encourage citizen action from below, driving virtuous circles of mutual empowerment between pro-accountability actors in both state and society.

The sandwich strategy relies on mutually-reinforcing interaction between pro-reform actors in both state and society, not just initiatives from one or the other arena. The hypothesis is that when reformers in government tangibly reduce the risks/costs of collective action, that process can bolster state-society pro-reform coalitions that collaborate for change. While this process makes intuitive sense, it can follow diverse pathways and encounter many roadblocks. The dynamics, strengths and limitations of sandwich strategies have not been documented and analyzed systematically. The figure below shows a possible pathway of convergence and conflict between actors for and against change in both state and society….(More)”.

sandwich strategy

Citizens ‘on mute’ in digital public service delivery

Curated on Posted on by Stefaan Verhulst

Blog by Sarah Giest at Data and Policy: “Various countries are digitalizing their welfare system in the larger context of austerity considerations and fraud detection goals, but these changes are increasingly under scrutiny. In short, digitalization of the welfare system means that with the help of mathematical models, data and/or the combination of different administrative datasets, algorithms issue a decision on, for example, an application for social benefits (Dencik and Kaun 2020).

Several examples exist where such systems have led to unfair treatment of welfare recipients. In Europe, the Dutch SyRI system has been banned by court, due to human rights violations in the profiling of welfare recipients, and the UK has found errors in the automated processes leading to financial hardship among citizens. In the United States and Canada, automated systems led to false underpayment or denial of benefits. A recent UN report (2019) even warns that countries are ‘stumbling zombie-like into a digital welfare dystopia’. Further, studies raise alarm that this process of digitalization is done in a way that it not only creates excessive information asymmetry among government and citizens, but also disadvantages certain groups more than others.

A closer look at the Dutch Childcare Allowance case highlights this. In this example, low-income parents were regarded as fraudsters by the Tax Authorities if they had incorrectly filled out any documents. An automated and algorithm-based procedure then also singled out dual-nationality families. The victims lost their allowance without having been given any reasons. Even worse, benefits already received were reclaimed. This led to individual hardship, where financial troubles and the categorization as a fraudster by government led for citizens to a chain of events from unpaid healthcare insurance and the inability to visit a doctor to job loss, potential home loss and mental health concerns (Volkskrant 2020)….(More)”.

Digitalization as a common good. Contribution to an inclusive recovery

Curated on Posted on by Stefaan Verhulst

Essay by Julia Pomares, Andrés Ortega & María Belén Abdala: “…The pandemic has accelerated the urgency of a new social contract for this era at national, regional, and global levels, and such a pact clearly requires a digital dimension. The Spanish government, for example, proposes that by 2025, 100 megabits per second should be achieved for 100% of the population. A company like Telefónica, for its part, proposes a “Digital Deal to build back better our societies and economies” to achieve a “fair and inclusive digital transition,” both for Spain and Latin America.

The pandemic and the way of coping with and overcoming it has also emphasized and aggravated the significance of different types of digital and connectivity gaps and divides, between countries and regions of the world, between rural and urban areas, between social groups, including income and gender-related gaps, and between companies (large and small), which need to be addressed and bridged in these new social digital contracts. For the combination of digital divides and the pandemic amplify social disparities and inequalities in various spheres of life. Digitalization can contribute to enlarge those divides, but also to overcome them.

Common good

In 2016, the UN, through its Human Rights Council and General Assembly, qualified access to the internet as a basic fundamental human right, from which all human rights can also be defended. In 2021, the Italian Presidency of the G20 has set universal access to the internet as a goal of the group.

We use the concept of common good, in a non-legal but economic sense, following Nobel Laureate Elinor Ostrom 6 who refers to the nature of use and not of ownership. In line with Ostrom, digitalization and connectivity as a common good respond to three characteristics:

  • It is non-rivalrous: Its consumption by anyone does not reduce the amount available to others (which in digitalization and connectivity is true to a certain extent, since it also relies on huge but limited storage and processing centers, and also on network capacity, both in the access and backbone network. It is the definition of service, where a distinction has to be made between the content of what is transmitted, and the medium used.)
  • It is non-excludable: It is almost impossible to prevent anyone from consuming it.
  • It is available, more or less, all over the world….(More)”.

How Low and Middle-Income Countries Are Innovating to Combat Covid

Curated on Posted on by Stefaan Verhulst

Article by Ben Ramalingam, Benjamin Kumpf, Rahul Malhotra and Merrick Schaefer: “Since the Covid-19 pandemic hit, innovators around the world have developed thousands of novel solutions and practical approaches to this unprecedented global health challenge. About one-fifth of those innovations have come from low- and middle-income countries across sub-Saharan Africa, South Asia, and Latin America, according to our analysis of WHO data, and they work to address the needs of poor, marginalized, or excluded communities at the so-called bottom of the pyramid.

Over the past year we’ve been able to learn from and support some of those inspiring innovators. Their approaches are diverse in scope and scale and cover a vast range of pandemic response needs — from infection prevention and control to community engagement, contract tracing, social protection, business continuity, and more.

Here we share seven lessons from those innovators that offer promising insights not only for the ongoing Covid response but also for how we think about, manage, and enable innovation.

1. Ensure that your solutions are sensitive to social and cultural dynamics. 

Successful innovations are relevant to the lived realities of the people they’re intended to help. Socially and culturally sensitive design approaches see greater uptake and use. This is true in both resource-constrained and resource-rich environments.

Take contact tracing in Kenya. In a context where more than half of all residents use public transportation every day, the provider of a ticketing app for Nairobi’s bus fleets adapted its software to collect real-time passenger data. The app has been used across one of the world’s most mobile populations to trace Covid-19 cases, identify future clusters, trigger automated warnings to exposed passengers, and monitor the maximum number of people that could safely be allowed in each vehicle….(More)”.

Amateurs without Borders: The Aspirations and Limits of Global Compassion

Curated on Posted on by Stefaan Verhulst

Book by Allison Schnable: “Amateurs without Borders examines the rise of new actors in the international development world: volunteer-driven grassroots international nongovernmental organizations. These small aid organizations, now ten thousand strong, sidestep the world of professionalized development aid by launching projects built around personal relationships and the skills of volunteers. This book draws on fieldwork in the United States and Africa, web data, and IRS records to offer the first large-scale systematic study of these groups. Amateurs without Borders investigates the aspirations and limits of personal compassion on a global scale….(More)”.

Privacy and Data Protection in Academia

Curated on Posted on by Stefaan Verhulst

Report by IAPP: “Today, demand for qualified privacy professionals is surging. Soon, societal, business and government needs for practitioners with expertise in the legal, technical and business underpinnings of data protection could far outstrip supply. To fill this gap, universities around the world are adding privacy curricula in their law, business and computer science schools. The IAPP’s Westin Research Center has catalogued these programs with the aim of promoting, catalyzing and supporting academia’s growing efforts to build an on-ramp to the privacy profession.

The information presented in our inaugural issue of “Privacy and Data Protection in Academia, A Global Guide to Curricula” represents the results of our publicly available survey. The programs included voluntarily completed the survey. The IAPP then organized the information provided and the designated contact at each institution verified the accu­racy of the information presented.

This is not a comprehen­sive list of colleges and universities offering privacy and data protection related curric­ula. We encourage higher education institu­tions interested in being included to com­plete the survey as the IAPP will periodically publish updates….(More)”.