Addressing trust in public sector data use

Curated on Posted on by Stefaan Verhulst

Centre for Data Ethics and Innovation: “Data sharing is fundamental to effective government and the running of public services. But it is not an end in itself. Data needs to be shared to drive improvements in service delivery and benefit citizens. For this to happen sustainably and effectively, public trust in the way data is shared and used is vital. Without such trust, the government and wider public sector risks losing society’s consent, setting back innovation as well as the smooth running of public services. Maximising the benefits of data driven technology therefore requires a solid foundation of societal approval.

AI and data driven technology offer extraordinary potential to improve decision making and service delivery in the public sector – from improved diagnostics to more efficient infrastructure and personalised public services. This makes effective use of data more important than it has ever been, and requires a step-change in the way data is shared and used. Yet sharing more data also poses risks and challenges to current governance arrangements.

The only way to build trust sustainably is to operate in a trustworthy way. Without adequate safeguards the collection and use of personal data risks changing power relationships between the citizen and the state. Insights derived by big data and the matching of different data sets can also undermine individual privacy or personal autonomy. Trade-offs are required which reflect democratic values, wider public acceptability and a shared vision of a data driven society. CDEI has a key role to play in exploring this challenge and setting out how it can be addressed. This report identifies barriers to data sharing, but focuses on building and sustaining the public trust which is vital if society is to maximise the benefits of data driven technology.

There are many areas where the sharing of anonymised and identifiable personal data by the public sector already improves services, prevents harm, and benefits the public. Over the last 20 years, different governments have adopted various measures to increase data sharing, including creating new legal sharing gateways. However, despite efforts to increase the amount of data sharing across the government, and significant successes in areas like open data, data sharing continues to be challenging and resource-intensive. This report identifies a range of technical, legal and cultural barriers that can inhibit data sharing.

Barriers to data sharing in the public sector

Technical barriers include limited adoption of common data standards and inconsistent security requirements across the public sector. Such inconsistency can prevent data sharing, or increase the cost and time for organisations to finalise data sharing agreements.

While there are often pre-existing legal gateways for data sharing, underpinned by data protection legislation, there is still a large amount of legal confusion on the part of public sector bodies wishing to share data which can cause them to start from scratch when determining legality and commit significant resources to legal advice. It is not unusual for the development of data sharing agreements to delay the projects for which the data is intended. While the legal scrutiny of data sharing arrangements is an important part of governance, improving the efficiency of these processes – without sacrificing their rigour – would allow data to be shared more quickly and at less expense.

Even when legal, the permissive nature of many legal gateways means significant cultural and organisational barriers to data sharing remain. Individual departments and agencies decide whether or not to share the data they hold and may be overly risk averse. Data sharing may not be prioritised by a department if it would require them to bear costs to deliver benefits that accrue elsewhere (i.e. to those gaining access to the data). Departments sharing data may need to invest significant resources to do so, as well as considering potential reputational or legal risks. This may hold up progress towards finding common agreement on data sharing. When there is an absence of incentives, even relatively small obstacles may mean data sharing is not deemed worthwhile by those who hold the data – despite the fact that other parts of the public sector might benefit significantly….(More)”.

Ethical and Legal Aspects of Open Data Affecting Farmers

Curated on Posted on by Stefaan Verhulst

Report by Foteini Zampati et al: “Open Data offers a great potential for innovations from which the agricultural sector can benefit decisively due to a wide range of possibilities for further use. However, there are many inter-linked issues in the whole data value chain that affect the ability of farmers, especially the poorest and most vulnerable, to access, use and harness the benefits of data and data-driven technologies.

There are technical challenges and ethical and legal challenges as well. Of all these challenges, the ethical and legal aspects related to accessing and using data by the farmers and sharing farmers’ data have been less explored.

We aimed to identify gaps and highlight the often-complex legal issues related to open data in the areas of law (e.g. data ownership, data rights) policies, codes of conduct, data protection, intellectual property rights, licensing contracts and personal privacy.

This report is an output of the Kampala INSPIRE Hackathon 2020. The Hackathon addressed key topics identified by the IST-Africa 2020 conference, such as: Agriculture, environmental sustainability, collaborative open innovation, and ICT-enabled entrepreneurship.

The goal of the event was to continue to build on the efforts of the 2019 Nairobi INSPIRE Hackathon, further strengthening relationships between various EU projects and African communities. It was a successful event, with more than 200 participants representing 26 African countries. The INSPIRE Hackathons are not a competition, rather the main focus is building relationships, making rapid developments, and collecting ideas for future research and innovation….(More)”.

Responsible, practical genomic data sharing that accelerates research

Curated on Posted on by Stefaan Verhulst

James Brian Byrd, Anna C. Greene, Deepashree Venkatesh Prasad, Xiaoqian Jiang & Casey S. Greene in Nature: “Data sharing anchors reproducible science, but expectations and best practices are often nebulous. Communities of funders, researchers and publishers continue to grapple with what should be required or encouraged. To illuminate the rationales for sharing data, the technical challenges and the social and cultural challenges, we consider the stakeholders in the scientific enterprise. In biomedical research, participants are key among those stakeholders. Ethical sharing requires considering both the value of research efforts and the privacy costs for participants. We discuss current best practices for various types of genomic data, as well as opportunities to promote ethical data sharing that accelerates science by aligning incentives….(More)”.

Preservation of Individuals’ Privacy in Shared COVID-19 Related Data

Curated on Posted on by Stefaan Verhulst

Paper by Stefan Sauermann et al: “This paper provides insight into how restricted data can be incorporated in an open-be-default-by-design digital infrastructure for scientific data. We focus, in particular, on the ethical component of FAIRER (Findable, Accessible, Interoperable, Ethical, and Reproducible) data, and the pseudo-anonymization and anonymization of COVID-19 datasets to protect personally identifiable information (PII). First we consider the need for the customisation of the existing privacy preservation techniques in the context of rapid production, integration, sharing and analysis of COVID-19 data. Second, the methods for the pseudo-anonymization of direct identification variables are discussed. We also discuss different pseudo-IDs of the same person for multi-domain and multi-organization. Essentially, pseudo-anonymization and its encrypted domain specific IDs are used to successfully match data later, if required and permitted, as well as to restore the true ID (and authenticity) in individual cases of a patient’s clarification.Third, we discuss application of statistical disclosure control (SDC) techniques to COVID-19 disease data. To assess and limit the risk of re-identification of individual persons in COVID-19 datasets (that are often enriched with other covariates like age, gender, nationality, etc.) to acceptable levels, the risk of successful re-identification by a combination of attribute values must be assessed and controlled. This is done using statistical disclosure control for anonymization of data. Lastly, we discuss the limitations of the proposed techniques and provide general guidelines on using disclosure risks to decide on appropriate modes for data sharing to preserve the privacy of the individuals in the datasets….(More)”.

Mapping Mobility Functional Areas (MFA) using Mobile Positioning Data to Inform COVID-19 Policies

Curated on Posted on by Stefaan Verhulst

EU Science Hub: “This work introduces the concept of data-driven Mobility Functional Areas (MFAs) as geographic zones with a high degree of intra-mobility exchanges. Such information, calculated at European regional scale thanks to mobile data, can be useful to inform targeted re-escalation policy responses in cases of future COVID-19 outbreaks (avoiding large-area or even national lockdowns). In such events, the geographic distribution of MFAs would define territorial areas to which lockdown interventions could be limited, with the result of minimizing socio-economic consequences of such policies. The analysis of the time evolution of MFAs can also be thought of as a measure of how human mobility changes not only in intensity but also in patterns, providing innovative insights into the impact of mobility containment measures. This work presents a first analysis for 15 European countries (14 EU Member States and Norway)….(More)”.

Surprising Alternative Uses of IoT Data

Curated on Posted on by Stefaan Verhulst

Essay by Massimo Russo and Tian Feng: “With COVID-19, the press has been leaning on IoT data as leading indicators in a time of rapid change. The Wall Street Journal and New York Times have leveraged location data from companies like TomTom, INRIX, and Cuebiq to predict economic slowdown and lockdown effectiveness.¹ Increasingly we’re seeing use cases like these, of existing data being used for new purposes and to drive new insights.² Even before the crisis, IoT data was revealing surprising insights when used in novel ways. In 2018, fitness app Strava’s exercise “heatmap” shockingly revealed locations, internal maps, and patrol routes of US military bases abroad.³

The idea of alternative data is also trending in the financial sector. Defined in finance as data from non-traditional data sources such as satellites and sensors, financial alternative data has grown from a niche tool used by select hedge funds to an investment input for large institutional investors.⁴ The sector is forecasted to grow seven-fold from 2016 to 2020, with spending nearing $2 billion.⁵ And it’s easy to see why: alternative data linked to IoT sources are able to give investors a real time, scalable view into how businesses and markets are performing.

This phenomenon of repurposing IoT data collected for one purpose for use for another purpose will extend beyond crisis or financial applications and will be focus of this article. For the purpose of our discussion, we’ll define intended data use as ones that deliver the value directly associated with the IoT application. On the other hand, alternative data use as ones linked to insights and application using the data outside of the intent of the initial IoT application.⁶ Alternative data use is important because it is incremental value outside of the original application.

Why should we think about this today? Increasingly CTOs are pursuing IoT projects with a fixed application in mind. Whereas early in IoT maturity, companies were eager to pilot the technology, now the focus has rightly shifted to IoT use cases with tangible ROI. In this environment, how should companies think about external data sharing when potential use cases are distant, unknown, or not yet existent? How can companies balance the abstract value of future use cases with the tangible risk of data misuse?…(More)”.

Medical data has a silo problem. These models could help fix it.

Curated on Posted on by Stefaan Verhulst

Scott Khan at the WEF: “Every day, more and more data about our health is generated. Data, which if analyzed, could hold the key to unlocking cures for rare diseases, help us manage our health risk factors and provide evidence for public policy decisions. However, due to the highly sensitive nature of health data, much is out of reach to researchers, halting discovery and innovation. The problem is amplified further in the international context when governments naturally want to protect their citizens’ privacy and therefore restrict the movement of health data across international borders. To address this challenge, governments will need to pursue a special approach to policymaking that acknowledges new technology capabilities.

Understanding data siloes

Data becomes siloed for a range of well-considered reasons ranging from restrictions on terms-of-use (e.g., commercial, non-commercial, disease-specific, etc), regulations imposed by governments (e.g., Safe Harbor, privacy, etc.), and an inability to obtain informed consent from historically marginalized populations.

Siloed data, however, also creates a range of problems for researchers looking to make that data useful to the general population. Siloes, for example, block researchers from accessing the most up-to-date information or the most diverse, comprehensive datasets. They can slow the development of new treatments and therefore, curtail key findings that can lead to much needed treatments or cures.

Even when these challenges are overcome, the incidences of data mis-use – where health data is used to explore non-health related topics or without an individual’s consent – continue to erode public trust in the same research institutions that are dependent on such data to advance medical knowledge.

Solving this problem through technology

Technology designed to better protect and decentralize data is being developed to address many of these challenges. Techniques such as homomorphic encryption (a cryptosystem that encrypts data with a public key) and differential privacy (a system leveraging information about a group without revealing details about individuals) both provide means to protect and centralize data while distributing the control of its use to the parties that steward the respective data sets.

Federated data leverages a special type of distributed database management system that can provide an alternative approach to centralizing encoded data without moving the data sets across jurisdictions or between institutions. Such an approach can help connect data sources while accounting for privacy. To further forge trust in the system, a federated model can be implemented to return encoded data to prevent unauthorized distribution of data and learnings as a result of the research activity.

To be sure, within every discussion of the analysis of aggregated data lies challenges with data fusion between data sets, between different studies, between data silos, between institutions. Despite there being several data standards that could be used, most data exist within bespoke data models built for a single purpose rather than for the facilitation of data sharing and data fusion. Furthermore, even when data has been captured into a standardized data model (e.g., the Global Alliance for Genomics and Health offers some models for standardizing sensitive health data), many data sets are still narrowly defined. They often lack any shared identifiers to combine data from different sources into a coherent aggregate data source useful for research. Within a model of data centralization, data fusion can be addressed through data curation of each data set, whereas within a federated model, data fusion is much more vexing….(More)“.

The European data market

Curated on Posted on by Stefaan Verhulst

European Commission: “It was the first European Data Market study (SMART 2013/0063) contracted by the European Commission in 2013 that made a first attempt to provide facts and figures on the size and trends of the EU data economy by developing a European data market monitoring tool.

The final report of the updated European Data Market (EDM) study (SMART 2016/0063) now presents in detail the results of the final round of measurement of the updated European Data Market Monitoring Tool contracted for the 2017-2020 period.

Designed along a modular structure, as a first pillar of the study, the European Data Market Monitoring Tool is built around a core set of quantitative indicators to provide a series of assessments of the emerging market of data at present, i.e. for the years 2018 through 2020, and with projections to 2025.

The key areas covered by the indicators measured in this report are:

  • The data professionals and the balance between demand and supply of data skills;
  • The data companies and their revenues;
  • The data user companies and their spending for data technologies;
  • The market of digital products and services (“Data market”);
  • The data economy and its impacts on the European economy.
  • Forecast scenarios of all the indicators, based on alternative market trajectories.

Additionally, as a second major work stream, the study also presents a series of descriptive stories providing a complementary view to the one offered by the Monitoring Tool (for example, “How Big Data is driving AI” or “The Secondary Use of Health Data and Data-driven Innovation in the European Healthcare Industry”), adding fresh, real-life information around the quantitative indicators. By focusing on specific issues and aspects of the data market, the stories offer an initial, indicative “catalogue” of good practices of what is happening in the data economy today in Europe and what is likely to affect the development of the EU data economy in the medium term.

Finally, as a third work stream of the study, a landscaping exercise on the EU data ecosystem was carried out together with some community building activities to bring stakeholders together from all segments of the data value chain. The map containing the results of the landscaping of the EU data economy as well as reports from the webinars organised by the study are available on the www.datalandscape.eu website….(More)”.

The National Cancer Institute Cancer Moonshot Public Access and Data Sharing Policy—Initial assessment and implications

Curated on Posted on by Stefaan Verhulst

Paper by Tammy M. Frisby and Jorge L. Contreras: “Since 2013, federal research-funding agencies have been required to develop and implement broad data sharing policies. Yet agencies today continue to grapple with the mechanisms necessary to enable the sharing of a wide range of data types, from genomic and other -omics data to clinical and pharmacological data to survey and qualitative data. In 2016, the National Cancer Institute (NCI) launched the ambitious $1.8 billion Cancer Moonshot Program, which included a new Public Access and Data Sharing (PADS) Policy applicable to funding applications submitted on or after October 1, 2017. The PADS Policy encourages the immediate public release of published research results and data and requires all Cancer Moonshot grant applicants to submit a PADS plan describing how they will meet these goals. We reviewed the PADS plans submitted with approximately half of all funded Cancer Moonshot grant applications in fiscal year 2018, and found that a majority did not address one or more elements required by the PADS Policy. Many such plans made no reference to the PADS Policy at all, and several referenced obsolete or outdated National Institutes of Health (NIH) policies instead. We believe that these omissions arose from a combination of insufficient education and outreach by NCI concerning its PADS Policy, both to potential grant applicants and among NCI’s program staff and external grant reviewers. We recommend that other research funding agencies heed these findings as they develop and roll out new data sharing policies….(More)”.

The Computermen

Curated on Posted on by Stefaan Verhulst

Podcast Episode by Jill Lepore: “In 1966, just as the foundations of the Internet were being imagined, the federal government considered building a National Data Center. It would be a centralized federal facility to hold computer records from each federal agency, in the same way that the Library of Congress holds books and the National Archives holds manuscripts. Proponents argued that it would help regulate and compile the vast quantities of data the government was collecting. Quickly, though, fears about privacy, government conspiracies, and government ineptitude buried the idea. But now, that National Data Center looks like a missed opportunity to create rules about data and privacy before the Internet took off. And in the absence of government action, corporations have made those rules themselves….(More)”.