Uniting the UK’s Health Data: A Huge Opportunity for Society’

Curated on Posted on by Stefaan Verhulst

The Sudlow Review (UK): “…Surveys show that people in the UK overwhelmingly support the use of their health data with appropriate safeguards to improve lives. One of the review’s recommendations calls for continued engagement with patients, the public, and healthcare professionals to drive forward developments in health data research.

The review also features several examples of harnessing health data for public benefit in the UK, such as the national response to the COVID-19 pandemic. But successes like these are few and far between due to complex systems and governance. The review reveals that:

  • Access to datasets is difficult or slow, often taking months or even years.
  • Data is accessible for analysis and research related to COVID-19, but not to tackle other health conditions, such as other infectious diseases, cancer, heart disease, stroke, diabetes and dementia.
  • More complex types of health data generally don’t have national data systems (for example, most lab testing data and radiology imaging).
  • Barriers like these can delay or prevent hundreds of studies, holding back progress that could improve lives…

The Sudlow Review’s recommendations provide a pathway to establishing a secure and trusted health data system for the UK:

  1. Major national public bodies with responsibility for or interest in health data should agree a coordinated joint strategy to recognise England’s health data for what they are: a critical national infrastructure.
  2. Key government health, care and research bodies should establish a national health data service in England with accountable senior leadership.
  3. The Department of Health and Social Care should oversee and commission ongoing, coordinated, engagement with patients, public, health professionals, policymakers and politicians.
  4. The health and social care departments in the four UK nations should set a UK-wide approach to streamline data access processes and foster proportionate, trustworthy data governance.
  5. National health data organisations and statistical authorities in the four UK nations should develop a UK-wide system for standards and accreditation of secure data environments (SDEs) holding data from the health and care system…(More)”.

Normative Foundations for International Data Governance: Goals and Principles

Curated on Posted on by Stefaan Verhulst

Proposed Foundations by the United Nations System Chief Executives Board for Coordination: “…suggests a set of common goals and principles that could form the normative basis for international data governance. The document does not present universally agreed goals and principles but seeks to provide an input to ongoing and future deliberations on the topic, including within the context of follow-up to the Global Digital Compact and other intergovernmental processes. Prepared by the HLCP Working Group on international data governance, the document seeks to complement existing standards and principles and builds on the Group’s previous paper “International Data Governance: Pathways to Progress”,  which outlined a vision and steps towards the promotion of data governance grounded in human rights and sustainable development through a multistakeholder consultative approach.

Central to the document are three overarching goals: value, trust, and equity. Value highlights the necessity for an enabling environment that fosters responsible data use and reuse, alongside the critical importance of interoperability to facilitate effective data sharing. Trust is cultivated through a human rights-based approach, prioritizing data protection and privacy, while ensuring accountability and high standards of data quality throughout the lifecycle. Equity is promoted by empowering individuals and communities exercise control over their personal data and ensuring that the benefits of data access are distributed fairly, particularly to vulnerable and marginalized groups…(More)”.

Towards effective governance of justice data

Curated on Posted on by Stefaan Verhulst

OECD working paper: “…explores the role of data governance in advancing people-centred justice systems. It outlines the objectives, values, and practices necessary to harness data effectively, drawing on OECD policy instruments. The paper provides actionable insights for policymakers aiming to implement data-driven justice reforms. It also addresses the challenges and opportunities presented by digital transformation in the justice sector, advocating for a strategic approach that balances innovation with the protection of fundamental rights. It incorporates lessons from data governance activities and experiences in justice and other relevant sectors. This paper is essential reading for those involved in modernisation of justice and data governance…(More)”.

Federated Data Infrastructures for Scientific Use

Curated on Posted on by Stefaan Verhulst

Policy paper by the German Council for Scientific Information Infrastructures: “…provides an overview and a comparative in-depth analysis of the emerging research (and research related) data infrastructures NFDI, EOSC, Gaia-X and the European Data Spaces. In addition, the Council makes recommendations for their future development and coordination. The RfII notes that access to genuine high-quality research data and related core services is a matter of basic public supply and strongly advises to achieve coherence between the various initiatives and approaches…(More)”.

Unlocking Green Deal Data: Innovative Approaches for Data Governance and Sharing in Europe

Curated on Posted on by Stefaan Verhulst

JRC Report: “Drawing upon the ambitious policy and legal framework outlined in the Europe Strategy for Data (2020) and the establishment of common European data spaces, this Science for Policy report explores innovative approaches for unlocking relevant data to achieve the objectives of the European Green Deal.

The report focuses on the governance and sharing of Green Deal data, analysing a variety of topics related to the implementation of new regulatory instruments, namely the Data Governance Act and the Data Act, as well as the roles of various actors in the data ecosystem. It provides an overview of the current incentives and disincentives for data sharing and explores the existing landscape of Data Intermediaries and Data Altruism Organizations. Additionally, it offers insights from a private sector perspective and outlines key data governance and sharing practices concerning Citizen-Generated Data (CGD).

The main conclusions build upon the concept of “Systemic Data Justice,” which emphasizes equity, accountability, and fair representation to foster stronger connections between the supply and demand of data for a more effective and sustainable data economy. Five policy recommendations outline a set of main implications and actionable points for the revision of the INSPIRE Directive (2007) within the context of the common European Green Deal data space, and toward a more sustainable and fair data ecosystem. However, the relevance of these recommendations spills over Green Deal data only, as they outline key elements to ensure that any data ecosystem is both just and impact-oriented…(More)”.

Enabling Digital Innovation in Government

Curated on Posted on by Stefaan Verhulst

OECD Report: “…presents the OECD’s definition of GovTech (Chapter 2) and sets out the GovTech Policy Framework (Chapter 3). The framework is designed to guide governments on how to establish the conditions for successful, sustainable, and effective GovTech.

The framework consists of two parts: the GovTech Building Blocks and the GovTech Enablers. The building blocks (Chapter 3) represent the foundations at the micro-level needed to establish impactful GovTech practices within public sectors by introducing more agile practices, mitigating risks, and building meaningful collaboration with the GovTech ecosystem. These building blocks include:

  • Mature digital government infrastructure: including the necessary technology, infrastructure, tools, and data governance to enable both GovTech collaborations and the digital solutions they develop.
  • Capacities for collaboration and experimentation: within the public sector, including the digital skills and multidisciplinary teams; agile processes, tools, and methodologies; and a culture that encourages experimentation and accepts failure. 
  • Resources and implementation support: considering how to make funding available, how to evolve procurement approaches, and how to scale successful pilots across organisations and internationally.
  • Availability and maturity of GovTech partners: including acceleration programmes to support start-ups growth by facilitating access to capital, the scaling up of solutions, and minimising barriers to access procurement opportunities.

At the macro-level, the enablers (Chapter 4) instead create an environment that fosters the development of GovTech and facilitates good practices. This is done at the:

  • Strategic layer: where governments could use GovTech strategies and champions in senior leadership positions to mobilise support and set a clear direction for GovTech.
  • Institutional layer: where governments could seek collaboration and knowledge-sharing across institutions at the national, regional, or policy levels.
  • Network layer: where both governments and GovTech actors should seek to mobilise the network collectively to strengthen the GovTech practice and garner broader support from communities…(More)”

Rediscovering the Pleasures of Pluralism: The Potential of Digitally Mediated Civic Participation

Curated on Posted on by Stefaan Verhulst

Essay by Lily L. Tsai and Alex Pentland: “Human society developed when most collective decision-making was limited to small, geographically concentrated groups such as tribes or extended family groups. Discussions about community issues could take place among small numbers of people with similar concerns. As coordination across larger distances evolved, the costs of travel required representatives from each clan or smaller group to participate in deliberations and decision-making involving multiple local communities. Divergence in the interests of representatives and their constituents opened up opportunities for corruption and elite capture.

Technologies now enable very large numbers of people to communicate, coordinate, and make collective decisions on the same platform. We have new opportunities for digitally enabled civic participation and direct democracy that scale for both the smallest and largest groups of people. Quantitative experiments, sometimes including tens of millions of individuals, have examined inclusiveness and efficiency in decision-making via digital networks. Their findings suggest that large networks of nonexperts can make practical, productive decisions and engage in collective action under certain (1) conditions. (2) These conditions include shared knowledge among individuals and communities with similar concerns, and information about their recent actions and outcomes…(More)”

Exploring the Intersections of Open Data and Generative AI: Recent Additions to the Observatory

Curated on Posted on by Stefaan Verhulst

Blog by Roshni Singh, Hannah Chafetz, Andrew Zahuranec, Stefaan Verhulst: “The Open Data Policy Lab’s Observatory of Examples of How Open Data and Generative AI Intersect provides real-world use cases of where open data from official sources intersects with generative artificial intelligence (AI), building from the learnings from our report, “A Fourth Wave of Open Data? Exploring the Spectrum of Scenarios for Open Data and Generative AI.” 

The Observatory includes over 80 examples from several domains and geographies–ranging from supporting administrative work within the legal department of the Government of France to assisting researchers across the African continent in navigating cross-border data sharing laws. The examples include generative AI chatbots to improve access to services, conversational tools to help analyze data, datasets to improve the quality of the AI output, and more. A key feature of the Observatory is its categorization across our Spectrum of Scenarios framework, shown below. Through this effort, we aim to bring together the work already being done and identify ways to use generative AI for the public good.

Screenshot 2024 10 25 at 10.50.23 am

This Observatory is an attempt to grapple with the work currently being done to apply generative AI in conjunction with official open data. It does not make a value judgment on their efficacy or practices. Many of these examples have ethical implications, which merit further attention and study. 

From September through October, we added to the Observatory:

  • Bayaan Platform: A conversational tool by the Statistics Centre Abu Dhabi that provides decision makers with data analytics and visualization support.
  • Berufsinfomat: A generative AI tool for career coaching in Austria.
  • ChatTCU: A chatbot for Brazil’s Federal Court of Accounts.
  • City of Helsinki’s AI Register: An initiative aimed at leveraging open city data to enhance civic services and facilitate better engagement with residents.
  • Climate Q&A: A generative AI chatbot that provides information about climate change based on scientific reports.
  • DataLaw.Bot: A generative AI tool that disseminates data sharing regulations with researchers across several African countries…(More)”.

Unlocking data for climate action requires trusted marketplaces

Curated on Posted on by Stefaan Verhulst

Report by Digital Impact Alliance: “In 2024, the northern hemisphere recorded the hottest summer overall, the hottest day, and the hottest ever month of August. That same month – August 2024 – this warming fueled droughts in Italy and intensified typhoons that devastated parts of the Philippines, Taiwan, and China. The following month, new research calculated that warming is costing the global economy billions of dollars: an increase in extreme heat and severe drought costs about 0.2% of a country’s GDP. 

These are only the latest stories and statistics that illustrate the growing costs of climate change – data points that have emerged in the short time since we published our second Spotlight on unlocking climate data with open transaction networks.

This third paper in the series continues the work of the Joint Learning Network on Unlocking Data for Climate Action (Climate Data JLN). This multi-disciplinary network identified multiple promising models to explore in the context of unlocking data for climate action. This Spotlight paper examines the third of these models: data spaces. Through examination of data spaces in action, the paper analyzes the key elements that render them more or less applicable to specific climate-related data sets. Data spaces are relatively new and mostly conceptual, with only a handful of implementations in process and concentrated in a few geographic areas. While this model requires extensive up-front work to agree upon governance and technical standards, the result is an approach that overcomes trust and financing issues by maintaining data sovereignty and creating a marketplace for data exchange…(More)”.

Local Systems

Curated on Posted on by Stefaan Verhulst

Position Paper by USAID: “…describes the key approaches USAID will use to translate systems thinking into systems practice. It focuses on ways USAID can better understand and engage local systems to support them in producing more sustainable results. Systems thinking is a mindset and set of tools that we use to understand how systems behave and produce certain results or outcomes. Systems practice is the application of systems thinking to better understand challenges and strengthen the capacity of local systems to unlock locally led, sustained progress. The shift from systems thinking to systems practice is driven by a desire to integrate systems practice throughout the Program Cycle and increase our capacity to actively and adaptively manage programming in ways that recognize complexity and help make our programs more effective and sustainable.

These approaches will be utilized alongside and within the context of USAID’s policies and guidance, including technical guidance for specific sectors, as well as evidence and lessons learned from partners around the world. Systems thinking is a long-standing discipline that can serve as a powerful tool for understanding and working with local systems. It has been a consistent component of USAID’s decades-long commitment to locally led development and humanitarian assistance. USAID uses systems thinking to better understand the complex and interrelated challenges we confront – from climate change to migration to governance – and the perspectives of diverse stakeholders on these issues. When we understand challenges as complex systems – where outcomes emerge from the interactions and relationships between actors and elements in that system – we can leverage and help strengthen the local capacities and relationships that will ultimately drive sustainable progress…(More)”.