Creating a Citizen Participation Service and other ideas

Curated on Posted on by Stefaan Verhulst

Paper by Kathy Peach: “…This paper explains how public participation can improve national policy, long-term decision making and increase democratic legitimacy and trust.

Taking a practical approach it examines how the wide range of tools available for harnessing citizen’s collective intelligence and explores how, and in what circumstances, they can best be used.

Examining how public participation can be embedded in climate policy at a national level, it suggests three models for restructuring central government – a Public Participation Secretariat, new public bodies and at most ambitious, a Citizen Participation Service.

Finally, it outlines the contours of a flagship participation programme for climate policy covering digital infrastructure, citizen science, participatory budgeting and other proposals…(More)”.

The Time is Now: Establishing a Mutual Commitment Framework (MCF) to Accelerate Data Collaboratives

Curated on Posted on by Stefaan Verhulst

Article by Stefaan Verhulst, Andrew Schroeder and William Hoffman: “The key to unlocking the value of data lies in responsibly lowering the barriers and shared risks of data access, re-use, and collaboration in the public interest. Data collaboratives, which foster responsible access and re-use of data among diverse stakeholders, provide a solution to these challenges.

Today, however, setting up data collaboratives takes too much time and is prone to multiple delays, hindering our ability to understand and respond swiftly and effectively to urgent global crises. The readiness of data collaboratives during crises faces key obstacles in terms of data use agreements, technical infrastructure, vetted and reproducible methodologies, and a clear understanding of the questions which may be answered more effectively with additional data.

Organizations aiming to create data collaboratives often face additional challenges, as they often lack established operational protocols and practices which can streamline implementation, reduce costs, and save time. New regulations are emerging that should help drive the adoption of standard protocols and processes. In particular, the EU Data Governance Act and the forthcoming Data Act aim to enable responsible data collaboration. Concepts like data spaces and rulebooks seek to build trust and strike a balance between regulation and technological innovation.

This working paper advances the case for creating a Mutual Commitment Framework (MCF) in advance of a crisis that can serve as a necessary and practical means to break through chronic choke points and shorten response times. By accelerating the establishment of operational (and legally cognizable) data collaboratives, duties of care can be defined and a stronger sense of trust, clarity, and purpose can be instilled among participating entities. This structured approach ensures that data sharing and processing are conducted within well-defined, pre-authorized boundaries, thereby lowering shared risks and promoting a conducive environment for collaboration…(More)”.

Innovation in Anticipation for Migration: A Deep Dive into Methods, Tools, and Data Sources

Curated on Posted on by Stefaan Verhulst

Blog by Sara Marcucci and Stefaan Verhulst: “In the ever-evolving landscape of anticipatory methods for migration policy, innovation is a dynamic force propelling the field forward. This seems to be happening in two main ways: first, as we mentioned in our previous blog, one of the significant shifts lies in the blurring of boundaries between quantitative forecasting and qualitative foresight, as emerging mixed-method approaches challenge traditional paradigms. This transformation opens up new pathways for understanding complex phenomena, particularly in the context of human migration flows. 

Innovation in Anticipation for Migration: A Deep Dive into Methods, Tools, and Data Sources

Second, the innovation happening today is not necessarily rooted in the development of entirely new methodologies, but rather in how existing methods are adapted and enhanced. Indeed, innovation seems to extend to the utilization of diverse tools and data sources that bolster the effectiveness of existing methods, offering a more comprehensive and timely perspective on migration trends.

In the context of this blog series, methods refer to the various approaches and techniques used to anticipate and analyze migration trends, challenges, and opportunities. These methods are employed to make informed decisions and develop policies related to human migration. They can include a wide range of strategies to gather and interpret data and insights in the field of migration policy. 

Tools, on the other hand, refer to the specific instruments or technologies used to support and enhance the effectiveness of these methods. They encompass a diverse set of resources and technologies that facilitate data collection, analysis, and decision-making in the context of migration policy. These tools can include both quantitative and qualitative data collection and analysis tools, as well as innovative data sources, software, and techniques that help enhance anticipatory methods.

This blog aims to deep dive into the main anticipatory methods adopted in the field of migration, as well as some of the tools and data sources employed to enhance and experiment with them. First, the blog will provide a list of methods considered; second, it will illustrate the main innovative tools employed, and finally it will provide a set of new, non-traditional data sources that are increasingly being used to feed anticipatory methods…(More)”.

A Blueprint for Designing Better Digital Government Services

Curated on Posted on by Stefaan Verhulst

Article by Joe Lee: “Public perceptions about government and government service delivery are at an all-time low across the United States. Plagued government legacy systems—too often using outdated programming language—are struggling to hold up under the weight of increased demand, and IT modernization efforts are floundering at all levels of government. This is taking place against the backdrop of a rapidly digitizing world that places a premium on speedy, seamless, simple, and secure customer service.

Government’s “customers” typically confront a whiplash experience between accessing services from the private sector and government. If a customer doesn’t like the quality of service they get from a particular business, they can usually turn to any number of competitors; that same customer has no viable alternative to a service provided by government, regardless of the quality of that service.

When Governor Josh Shapiro took office earlier this year in Pennsylvania, the start of a new administration presented an opportunity to reexamine how the Commonwealth of Pennsylvania delivered services for residents and visitors. As veteran government technologist, Jennifer Pahlka, points out, government tends to be fixated on ensuring compliance with policies and procedures frequently at the expense of the people they serve. In other words, while government services may fulfill statutory and policy requirements, the speed, seamlessness, and simplicity in which that service is ultimately delivered to the end customer is oftentimes an afterthought.

There’s a chorus of voices in the growing public interest technology movement working to shift this stubborn paradigm to proactively and persistently center people at the heart of each interaction between government and the customer. In fact, Pennsylvania is part of a growing coalition of states transforming their digital services across the country. For Pennsylvania and so many states, the road to creating truly accessible digital services involves excavating a mountain of legacy systems and policies, changing cultural and organizational paradigms, and building a movement that puts people at the center of the problem…(More)”.

Overcoming the Challenges of Using Automated Technologies for Public Health Evidence Synthesis

Curated on Posted on by Stefaan Verhulst

Article by Lucy Hocking et al: “Many organisations struggle to keep pace with public health evidence due to the volume of published literature and length of time it takes to conduct literature reviews. New technologies that help automate parts of the evidence synthesis process can help conduct reviews more quickly and efficiently to better provide up-to-date evidence for public health decision making. To date, automated approaches have seldom been used in public health due to significant barriers to their adoption. In this Perspective, we reflect on the findings of a study exploring experiences of adopting automated technologies to conduct evidence reviews within the public health sector. The study, funded by the European Centre for Disease Prevention and Control, consisted of a literature review and qualitative data collection from public health organisations and researchers in the field. We specifically focus on outlining the challenges associated with the adoption of automated approaches and potential solutions and actions that can be taken to mitigate these. We explore these in relation to actions that can be taken by tool developers (e.g. improving tool performance and transparency), public health organisations (e.g. developing staff skills, encouraging collaboration) and funding bodies/the wider research system (e.g. researchers, funding bodies, academic publishers and scholarly journals)…(More)”

What causes such maddening bottlenecks in government? ‘Kludgeocracy.’

Curated on Posted on by Stefaan Verhulst

Article by Jennifer Pahlka: “Former president Donald Trump wants to “obliterate the deep state.” As a Democrat who values government, I am chilled by the prospect. But I sometimes partly agree with him.

Certainly, Trump and I are poles apart on the nature of the problem. His “deep state” evokes a shadowy cabal that doesn’t exist. What is true, however, is that red tape and misaligned gears frequently stymie progress on even the most straightforward challenges. Ten years ago, Steven M. Teles, a political science professor at Johns Hopkins University, coined the term “kludgeocracy” to describe the problem. Since then, it has only gotten worse.

Whatever you call it, the sprawling federal bureaucracy takes care of everything from the nuclear arsenal to the social safety net to making sure our planes don’t crash. Public servants do critical work; they should be honored, not disparaged.

Yet most of them are frustrated. I’ve spoken with staffers in a dozen federal agencies this year while rolling out my book about government culture and effectiveness. I heard over and over about rigid, maximalist interpretations of rules, regulations, policies and procedures that take precedence over mission. Too often acting responsibly in government has come to mean not acting at all.

Kludgeocracy Example No. 1: Within government, designers are working to make online forms and applications easier to use. To succeed, they need to do user research, most of which is supposed to be exempt from the data-collection requirements of the Paperwork Reduction Act. Yet compliance officers insist that designers send their research plans for approval by the White House Office of Information and Regulatory Affairs (OIRA) under the act. Countless hours can go into the preparation and internal approvals of a “package” for OIRA, which then might post the plans to the Federal Register for the fun-house-mirror purpose of collecting public input on a plan to collect public input. This can result in months of delay. Meanwhile, no input happens, and no paperwork gets reduced.

Kludgeocracy Example No. 2: For critical economic and national security reasons, Congress passed a law mandating the establishment of a center for scientific research. Despite clear legislative intent, work was bogged down for months when one agency applied a statute to prohibit a certain structure for the center and another applied a different statute to require that structure. The lawyers ultimately found a solution, but it was more complex and cumbersome than anyone had hoped for. All the while, the clock was ticking.

What causes such maddening bottlenecks? The problem is mainly one of culture and incentives. It could be solved if leaders in each branch — in good faith — took the costs seriously…(More)”.

Toward Equitable Innovation in Health and Medicine: A Framework 

Curated on Posted on by Stefaan Verhulst

Report by The National Academies: “Advances in biomedical science, data science, engineering, and technology are leading to high-pace innovation with potential to transform health and medicine. These innovations simultaneously raise important ethical and social issues, including how to fairly distribute their benefits and risks. The National Academies of Sciences, Engineering, and Medicine, in collaboration with the National Academy of Medicine, established the Committee on Creating a Framework for Emerging Science, Technology, and Innovation in Health and Medicine to provide leadership and engage broad communities in developing a framework for aligning the development and use of transformative technologies with ethical and equitable principles. The committees resulting report describes a governance framework for decisions throughout the innovation life cycle to advance equitable innovation and support an ecosystem that is more responsive to the needs of a broader range of individuals and is better able to recognize and address inequities as they arise…(More)”.

Data Governance and Privacy Challenges in the Digital Healthcare Revolution

Curated on Posted on by Stefaan Verhulst

Paper by Nargiz Kazimova: “The onset of the COVID-19 pandemic has catalyzed an imperative for digital transformation in the healthcare sector. This study investigates the accelerated shift towards a digitally-enhanced healthcare delivery system, advocating for the widespread adoption of telemedicine and the relaxation of regulatory barriers. The paper also scrutinizes the burgeoning use of electronic health records, wearable devices, artificial intelligence, and machine learning, and how these technologies offer promising avenues for improving patient care and medical outcomes. Despite the advancements, the rapid digital integration raises significant privacy and security concerns. The stigma associated with certain illnesses and potential discrimination presents serious challenges that digital healthcare innovations can exacerbate.
This research underscores the criticality of stringent data governance to safeguard personal health information in the face of growing digitalization. The analysis begins with an exploration of the data governance role in optimizing healthcare outcomes and preserving privacy, followed by an assessment of the breadth and depth of health data proliferation. The paper subsequently navigates the complex legal and ethical terrain, contrasting HIPAA and GDPR frameworks to underline the current regulatory challenges.
A comprehensive set of strategic recommendations is provided for reinforcing data governance and enhancing privacy protection in healthcare. The author advises on updating legal provisions to match the dynamic healthcare environment, widening the scope of privacy laws, and improving the transparency of data-sharing practices. The establishment of ethical guidelines for the collection and use of health data is also recommended, focusing on explicit consent, decision-making transparency, harm accountability, maintenance of data anonymity, and the mitigation of biases in datasets.
Moreover, the study advocates for stronger transparency in data sharing with clear communication on data use, rigorous internal and external audit mechanisms, and informed consent processes. The conclusion calls for increased collaboration between healthcare providers, patients, administrative staff, ethicists, regulators, and technology companies to create governance models that reconcile patient rights with the expansive use of health data. The paper culminates in a call to action for a balanced approach to privacy and innovation in the data-driven era of healthcare…(More)”.

The battle over right to repair is a fight over your car’s data

Curated on Posted on by Stefaan Verhulst

Article by Ofer Tur-Sinai: “Cars are no longer just a means of transportation. They have become rolling hubs of data communication. Modern vehicles regularly transmit information wirelessly to their manufacturers.

However, as cars grow “smarter,” the right to repair them is under siege.

As legal scholars, we find that the question of whether you and your local mechanic can tap into your car’s data to diagnose and repair spans issues of property rights, trade secrets, cybersecurity, data privacy and consumer rights. Policymakers are forced to navigate this complex legal landscape and ideally are aiming for a balanced approach that upholds the right to repair, while also ensuring the safety and privacy of consumers…

Until recently, repairing a car involved connecting to its standard on-board diagnostics port to retrieve diagnostic data. The ability for independent repair shops – not just those authorized by the manufacturer – to access this information was protected by a state law in Massachusetts, approved by voters on Nov. 6, 2012, and by a nationwide memorandum of understanding between major car manufacturers and the repair industry signed on Jan. 15, 2014.

However, with the rise of telematics systems, which combine computing with telecommunications, these dynamics are shifting. Unlike the standardized onboard diagnostics ports, telematics systems vary across car manufacturers. These systems are often protected by digital locks, and circumventing these locks could be considered a violation of copyright law. The telematics systems also encrypt the diagnostic data before transmitting it to the manufacturer.

This reduces the accessibility of telematics information, potentially locking out independent repair shops and jeopardizing consumer choice – a lack of choice that can lead to increased costs for consumers….

One issue left unresolved by the legislation is the ownership of vehicle data. A vehicle generates all sorts of data as it operates, including location, diagnostic, driving behavior, and even usage patterns of in-car systems – for example, which apps you use and for how long.

In recent years, the question of data ownership has gained prominence. In 2015, Congress legislated that the data stored in event data recorders belongs to the vehicle owner. This was a significant step in acknowledging the vehicle owner’s right over specific datasets. However, the broader issue of data ownership in today’s connected cars remains unresolved…(More)”.

Private UK health data donated for medical research shared with insurance companies

Curated on Posted on by Stefaan Verhulst

Article by Shanti Das: “Sensitive health information donated for medical research by half a million UK citizens has been shared with insurance companies despite a pledge that it would not be.

An Observer investigation has found that UK Biobank opened up its vast biomedical database to insurance sector firms several times between 2020 and 2023. The data was provided to insurance consultancy and tech firms for projects to create digital tools that help insurers predict a person’s risk of getting a chronic disease. The findings have raised concerns among geneticists, data privacy experts and campaigners over vetting and ethical checks at Biobank.

Set up in 2006 to help researchers investigating diseases, the database contains millions of blood, saliva and urine samples, collected regularly from about 500,000 adult volunteers – along with medical records, scans, wearable device data and lifestyle information.

Approved researchers around the world can pay £3,000 to £9,000 to access records ranging from medical history and lifestyle information to whole genome sequencing data. The resulting research has yielded major medical discoveries and led to Biobank being considered a “jewel in the crown” of British science.

Biobank said it strictly guarded access to its data, only allowing access by bona fide researchers for health-related projects in the public interest. It said this included researchers of all stripes, whether employed by academic, charitable or commercial organisations – including insurance companies – and that “information about data sharing was clearly set out to participants at the point of recruitment and the initial assessment”.

But evidence gathered by the Observer suggests Biobank did not explicitly tell participants it would share data with insurance companies – and made several public commitments not to do so.

When the project was announced, in 2002, Biobank promised that data would not be given to insurance companies after concerns were raised that it could be used in a discriminatory way, such as by the exclusion of people with a particular genetic makeup from insurance.

In an FAQ section on the Biobank website, participants were told: “Insurance companies will not be allowed access to any individual results nor will they be allowed access to anonymised data.” The statement remained online until February 2006, during which time the Biobank project was subject to public scrutiny and discussed in parliament.

The promise was also reiterated in several public statements by backers of Biobank, who said safeguards would be built in to ensure that “no insurance company or police force or employer will have access”.

This weekend, Biobank said the pledge – made repeatedly over four years – no longer applied. It said the commitment had been made before recruitment formally began in 2007 and that when Biobank volunteers enrolled they were given revised information.

This included leaflets and consent forms that contained a provision that anonymised Biobank data could be shared with private firms for “health-related” research, but did not explicitly mention insurance firms or correct the previous assurances…(More)”