Data can help decarbonize cities – let us explain

Curated on Posted on by Stefaan Verhulst

Article by Stephen Lorimer and Andrew Collinge: “The University of Birmingham, Alan Turing Institute and Centre for Net Zero are working together, using a tool developed by the Centre, called Faraday, to model a more detailed understanding of energy flows within the district and between it and the neighbouring 8,000 residents. Faraday is a generative AI model trained on one of the UK’s largest smart metre datasets. The model is helping to unlock a more granular view of energy sources and changing energy usage, providing the basis for modelling future energy consumption and local smart grid management.

The partners are investigating the role that trusted data aggregators can play if they can take raw data and desensitize it to a point where it can be shared without eroding consumer privacy or commercial advantage.

Data is central to both initiatives and all cities seeking a renewable energy transition. But there are issues to address, such as common data standards, governance and data competency frameworks (especially across the built environment supply chain)…

Building the governance, standards and culture that delivers confidence in energy data exchange is essential to maximizing the potential of carbon reduction technologies. This framework will ultimately support efficient supply chains and coordinate market activity. There are lessons from the Open Banking initiative, which provided the framework for traditional financial institutions, fintech and regulators to deliver innovation in financial products and services with carefully shared consumer data.

In the energy domain, there are numerous advantageous aspects to data sharing. It helps overcome barriers in the product supply chain, from materials to low-carbon technologies (heat pumps, smart thermostats, electric vehicle chargers etc). Free and Open-Source Software (FOSS) providers can use data to support installers and property owners.

Data interoperability allows third-party products and services to communicate with any end-user device through open or proprietary Internet of Things gateway platforms such as Tuya or IFTTT. A growing bank of post-installation data on the operation of buildings (such as energy efficiency and air quality) will boost confidence in the future quality of retrofits and make for easier decisions on planning approval and grid connections. Finally, data is increasingly considered key in securing the financing and private sector investment crucial to the net zero effort.

None of the above is easy. Organizational and technical complexity can slow progress but cities must be at the forefront of efforts to coordinate the energy data ecosystem and make the case for “data for decarbonization.”…(More)”.

Health Data Sharing to Support Better Outcomes: Building a Foundation of Stakeholder Trust

Curated on Posted on by Stefaan Verhulst

A Special Publication from the National Academy of Medicine: “The effective use of data is foundational to the concept of a learning health system—one that leverages and shares data to learn from every patient experience, and feeds the results back to clinicians, patients and families, and health care executives to transform health, health care, and health equity. More than ever, the American health care system is in a position to harness new technologies and new data sources to improve individual and population health.

Learning health systems are driven by multiple stakeholders—patients, clinicians and clinical teams, health care organizations, academic institutions, government, industry, and payers. Each stakeholder group has its own sources of data, its own priorities, and its own goals and needs with respect to sharing that data. However, in America’s current health system, these stakeholders operate in silos without a clear understanding of the motivations and priorities of other groups. The three stakeholder working groups that served as the authors of this Special Publication identified many cultural, ethical, regulatory, and financial barriers to greater data sharing, linkage, and use. What emerged was the foundational role of trust in achieving the full vision of a learning health system.

This Special Publication outlines a number of potentially valuable policy changes and actions that will help drive toward effective, efficient, and ethical data sharing, including more compelling and widespread communication efforts to improve awareness, understanding, and participation in data sharing. Achieving the vision of a learning health system will require eliminating the artificial boundaries that exist today among patient care, health system improvement, and research. Breaking down these barriers will require an unrelenting commitment across multiple stakeholders toward a shared goal of better, more equitable health.

We can improve together by sharing and using data in ways that produce trust and respect. Patients and families deserve nothing less…(More)”.

Driving Excellence in Official Statistics: Unleashing the Potential of Comprehensive Digital Data Governance

Curated on Posted on by Stefaan Verhulst

Paper by Hossein Hassani and Steve McFeely: “With the ubiquitous use of digital technologies and the consequent data deluge, official statistics faces new challenges and opportunities. In this context, strengthening official statistics through effective data governance will be crucial to ensure reliability, quality, and access to data. This paper presents a comprehensive framework for digital data governance for official statistics, addressing key components, such as data collection and management, processing and analysis, data sharing and dissemination, as well as privacy and ethical considerations. The framework integrates principles of data governance into digital statistical processes, enabling statistical organizations to navigate the complexities of the digital environment. Drawing on case studies and best practices, the paper highlights successful implementations of digital data governance in official statistics. The paper concludes by discussing future trends and directions, including emerging technologies and opportunities for advancing digital data governance…(More)”.

The Urgent Need to Reimagine Data Consent

Curated on Posted on by Stefaan Verhulst

Article by Stefaan G. Verhulst, Laura Sandor & Julia Stamm: “Recognizing the significant benefits that can arise from the use and reuse of data to tackle contemporary challenges such as migration, it is worth exploring new approaches to collect and utilize data that empower individuals and communities, granting them the ability to determine how their data can be utilized for various personal, community, and societal causes. This need is not specific to migrants alone. It applies to various regions, populations, and fields, ranging from public health and education to urban mobility. There is a pressing demand to involve communities, often already vulnerable, to establish responsible access to their data that aligns with their expectations, while simultaneously serving the greater public good.

We believe the answer lies through a reimagination of the concept of consent. Traditionally, consent has been the tool of choice to secure agency and individual rights, but that concept, we would suggest, is no longer sufficient to today’s era of datafication. Instead, we should strive to establish a new standard of social license. Here, we’ll define what we mean by a social license and outline some of the limitations of consent (as it is typically defined and practiced today). Then we’ll describe one possible means of securing social license—through participatory decision -making…(More)”.

The Ethics of Sharing: Privacy, Data, and Common Goods

Curated on Posted on by Stefaan Verhulst

Paper by Sille Obelitz Søe & Jens-Erik Mai: “Given the concerns about big tech’s hoarding of data, creation of profiles, mining of data, and extrapolation of new knowledge from their data warehouses, there is a need and interest in devising policies and regulations that better shape big tech’s influence on people and their lives. One such proposal is to create data commons. In this paper, we examine the idea of data commons as well as the concept of sharing in relation to the concept of personal data. We argue that personal data are different in nature from the objects of classical commons wherefore the logic of “sharing is caring” is flawed. We, therefore, develop an ethics of sharing taking privacy into account as well as the idea that sometimes the right thing to do is not sharing. This ethics of sharing is based in a proposal to conceptualize data commons as MacIntyrean practices and Wittgensteinian forms of life…(More)”.

Public Sector Use of Private Sector Personal Data: Towards Best Practices

Curated on Posted on by Stefaan Verhulst

Paper by Teresa Scassa: “Governments increasingly turn to the private sector as a source of data for various purposes. In some cases, the data that they seek to use is personal data. The public sector use of private sector personal data raises several important law and public policy concerns. These include the legal authority for such uses; privacy and data protection; ethics; transparency; and human rights. Governments that use private sector personal data without attending to the issues that such use raises may breach existing laws, which in some cases may not be well-adapted to evolving data practices. They also risk undermining public trust.

This paper uses two quite different recent examples from Canada where the use of private sector personal data by public sector actors caused considerable backlash and led to public hearings and complaints to the Privacy Commissioner. The examples are used to tease out the complex and interwoven law and policy issues. In some cases, the examples reveal issues that are particular to the evolving data society and that are not well addressed by current law or practice. The paper identifies key issues and important gaps and makes recommendations to address these. Although the examples discussed are Canadian and depend to some extent on Canadian law and institutions, the practices at issue are ones that are increasingly used around the world, and many of the issues raised are broadly relevant…(More)”.

Primer on Data Sharing

Curated on Posted on by Stefaan Verhulst

Primer by John Ure: “…encapsulates insights gleaned from the Inter-Modal Transport Data Sharing Programme, a collaborative effort known as Data Trust 1.0 (DT1), conducted in Hong Kong between 2020 and 2021. This initiative was a pioneering project that explored the feasibility of sharing operational data between public transport entities through a Trusted Third Party. The objective was to overcome traditional data silos and promote evidence-based public transport planning.

DT1, led by the ‘HK Team’ in conjunction with Dr. Jiangping Zhou and colleagues from the University of Hong Kong, successfully demonstrated that data sharing between public transport companies, both privately-owned and government-owned, was viable. Operational data, anonymised and encrypted, were shared with a Trusted Third Party and aggregated for analysis, supported by a Transport Data Analytics Service Provider. The data was used solely for analysis purposes, and confidentiality was maintained throughout.

The establishment of the Data Trust was underpinned by the creation of a comprehensive Data Sharing Framework (DSF). This framework, developed collaboratively, laid the groundwork for future data sharing endeavours. The DSF has been shared internationally, fostering the exchange of knowledge and best practices across diverse organisations and agencies. The Guide serves as a repository of lessons learned, accessible studies, and references, aimed at facilitating a comprehensive understanding of data sharing methodologies.

The central aim of the Guide is twofold: to promote self-learning and to offer clarity on intricate approaches related to data sharing. Its intention is to encourage researchers, governmental bodies, commercial enterprises, and civil society entities, including NGOs, to actively engage in data sharing endeavours. By combining data sets, these stakeholders can glean enhanced insights and contribute to the common good…(More)”.

Interested but Uncertain: Carbon Markets and Data Sharing among U.S. Crop Farmers

Curated on Posted on by Stefaan Verhulst

Paper by Guang Han and Meredith T. Niles: “The potential for farmers and agriculture to sequester carbon and contribute to global climate change goals is widely discussed. However, there is currently low participation in agricultural carbon markets and a limited understanding of farmer perceptions and willingness to participate. Furthermore, farmers’ concerns regarding data privacy may complicate participation in agricultural carbon markets, which necessitates farmer data sharing with multiple entities. This study aims to address research gaps by assessing farmers’ willingness to participate in agricultural carbon markets, identifying the determinants of farmers’ willingness regarding carbon markets participation, and exploring how farmers’ concerns for data privacy relate to potential participation in agricultural carbon markets. Data were collected through a multistate survey of 246 farmers and analyzed using descriptive statistics, factor analysis, and multinomial regression models. We find that the majority of farmers (71.8%) are aware of carbon markets and would like to sell carbon credits, but they express high uncertainty about carbon market information, policies, markets, and cost impacts. Just over half of farmers indicated they would share their data for education, developing tools and models, and improving markets and supply chains. Farmers who wanted to participate in carbon markets were more likely to have higher farm revenues, more likely to share their data overall, more likely to share their data with private organizations, and more likely to change farming practices and had more positive perceptions of the impact of carbon markets on farm profitability. In conclusion, farmers have a general interest in carbon market participation, but more information is needed to address their uncertainties and concerns…(More)”.

Data Collaboratives: Enabling a Healthy Data Economy Through Partnerships

Curated on Posted on by Stefaan Verhulst

Paper by Stefaan Verhulst (as Part of the Digital Revolution and New Social Contract Program): “…Overcoming data silos is key to addressing these data asymmetries and promoting a healthy data economy. This is equally true of silos that exist within sectors as it is of those among sectors (e.g., between the public and private sectors). Today, there is a critical mismatch between data supply and demand. The data that could be most useful rarely gets applied to the social, economic, cultural, and political problems it could help solve. Data silos, driven in large part by deeply entrenched asymmetries and a growing sense of “ownership,” are stunting the public good potential of data.

This paper presents a framework for responsible data sharing and reuse that could increase sharing between the public and private sectors to address some of the most entrenched asymmetries. Drawing on theoretical and empirical material, we begin by outlining how a period of rapid datafication—the Era of the Zettabyte—has led to data asymmetries that are increasingly deleterious to the public good. Sections II and III are normative. Having outlined the nature and scope of the problem, we present a number of steps and recommendations that could help overcome or mitigate data asymmetries. In particular, we focus on one institutional structure that has proven particularly promising: data collaboratives, an emerging model for data sharing between sectors. We show how data collaboratives could ease the flow of data between the public and private sectors, helping break down silos and ease asymmetries. Section II offers a conceptual overview of data collaboratives, while Section III provides an approach to operationalizing data collaboratives. It presents a number of specific mechanisms to build a trusted sharing ecology….(More)”.

Patients are Pooling Data to Make Diabetes Research More Representative

Curated on Posted on by Stefaan Verhulst

Blog by Tracy Kariuki: “Saira Khan-Gallo knows how overwhelming managing and living healthily with diabetes can be. As a person living with type 1 diabetes for over two decades, she understands how tracking glucose levels, blood pressure, blood cholesterol, insulin intake, and, and, and…could all feel like drowning in an infinite pool of numbers.

But that doesn’t need to be the case. This is why Tidepool, a non-profit tech organization composed of caregivers and other people living with diabetes such as Gallo, is transforming diabetes data management. Its data visualization platform enables users to make sense of the data and derive insights into their health status….

Through its Big Data Donation Project, Tidepool has been supporting the advancement of diabetes research by sharing anonymized data from people living with diabetes with researchers.

To date, more than 40,000 individuals have chosen to donate data uploaded from their diabetes devices like blood glucose meters, insulin pumps and continuous glucose monitors, which is then shared by Tidepool with students, academics, researchers, and industry partners — Making the database larger than many clinical trials. For instance, Oregon Health and Science University have used datasets collected from Tidepool to build an algorithm that predicts hypoglycemia, which is low blood sugar, with the goal of advancing closed loop therapy for diabetes management…(More)”.