Data Stewardship on the map: A study of tasks and roles in Dutch research institutes

Curated on Posted on by Stefaan Verhulst

Report by Verheul, Ingeborg et al: “Good research requires good data stewardship. Data stewardship encompasses all the different tasks and responsibilities that relate to caring for data during the various phases of the whole research life cycle. The basic assumption is that the researcher himself/herself is primarily responsible for all data.

However, the researcher does need professional support to achieve this. To that end, diverse supportive data stewardship roles and functions have evolved in recent years. Often they have developed over the course of time.

Their functional implementation depends largely on their place in the organization. This comes as no surprise when one considers that data stewardship consists of many facets that are traditionally assigned to different departments. Researchers regularly take on data stewardship tasks as well, not only for themselves but also in a wider context for a research group. This data stewardship work often remains unnoticed….(More)”.

Data to the rescue

Curated on Posted on by Stefaan Verhulst

Podcast by Kenneth Cukier: “Access to the right data can be as valuable in humanitarian crises as water or medical care, but it can also be dangerous. Misused or in the wrong hands, the same information can put already vulnerable people at further risk. Kenneth Cukier hosts this special edition of Babbage examining how humanitarian organisations use data and what they can learn from the profit-making tech industry. This episode was recorded live from Wilton Park, in collaboration with the United Nations OCHA Centre for Humanitarian Data…(More)”.

Facebook releases a trio of maps to aid with fighting disease outbreaks

Curated on Posted on by Stefaan Verhulst

Sarah Perez at Techcrunch: “Facebook… announced a new initiative focused on using its data and technologies to help nonprofit organizations and universities working in public health better map the spread of infectious diseases around the world. Specifically, the company is introducing three new maps: population density maps with demographic estimates, movement maps and network coverage maps. These, says Facebook, will help the health partners to understand where people live, how they’re moving and if they have connectivity — all factors that can aid in determining how to respond to outbreaks, and where supplies should be delivered.

As Facebook explained, health organizations rely on information like this when planning public health campaigns. But much of the information they rely on is outdated, like older census data. In addition, information from more remote communities can be scarce.

By combining the new maps with other public health data, Facebook believes organizations will be better equipped to address epidemics.

The new high-resolution population density maps will estimate the number of people living within 30-meter grid tiles, and provide insights on demographics, including the number of children under five, the number of women of reproductive age, as well as young and elderly populations. These maps aren’t built using Facebook data, but are instead built by using Facebook’s AI capabilities with satellite imagery and census information.

Movement maps, meanwhile, track aggregate data about Facebook users’ movements via their mobile phones (when location services are enabled). At scale, health partners can combine this with other data to predict where other outbreaks may occur next….(More)”.

Data Protection and Digital Agency for Refugees

Curated on Posted on by Stefaan Verhulst

Paper by Dragana Kaurin: “For the millions of refugees fleeing conflict and persecution every year, access to information about their rights and control over their personal data are crucial for their ability to assess risk and navigate the asylum process. While asylum seekers are required to provide significant amounts of personal information on their journey to safety, they are rarely fully informed of their data rights by UN agencies or local border control and law enforcement staff tasked with obtaining and processing their personal information. Despite recent improvements in data protection mechanisms in the European Union, refugees’ informed consent for the collection and use of their personal data is rarely sought. Using examples drawn from interviews with refugees who have arrived in Europe since 2013, and an analysis of the impacts of the 2016 EU-Turkey deal on migration, this paper analyzes how the vast amount of data collected from refugees is gathered, stored and shared today, and considers the additional risks this collection process poses to an already vulnerable population navigating a perilous information-decision gap….(More)”.

Humans and Big Data: New Hope? Harnessing the Power of Person-Centred Data Analytics

Curated on Posted on by Stefaan Verhulst

Paper by Carmel Martin, Keith Stockman and Joachim P. Sturmberg: “Big data provide the hope of major health innovation and improvement. However, there is a risk of precision medicine based on predictive biometrics and service metrics overwhelming anticipatory human centered sense-making, in the fuzzy emergence of personalized (big data) medicine. This is a pressing issue, given the paucity of individual sense-making data approaches. A human-centric model is described to address the gap in personal particulars and experiences in individual health journeys. The Patient Journey Record System (PaJR) was developed to improve human-centric healthcare by harnessing the power of person-centred data analytics using complexity theory, iterative health services and information systems applications over a 10 year period. PaJR is a web-based service supporting usually bi-weekly telephone calls by care guides to individuals at risk of readmissions.

This chapter describes a case study of the timing and context of readmissions using human (biopsychosocial) particular data which is based on individual experiences and perceptions with differing patterns of instability. This Australian study, called MonashWatch, is a service pilot using the PaJR system in the Dandenong Hospital urban catchment area of the Monash Health network. State public hospital big data – the Victorian HealthLinks Chronic Care algorithm provides case finding for high risk of readmission based on disease and service metrics. Monash Watch was actively monitoring 272 of 376 intervention patients, with 195 controls over 22 months (ongoing) at the time of the study.

Three randomly selected intervention cases describe a dynamic interplay of self-reported change in health and health care, medication, drug and alcohol use, social support structure. While the three cases were at similar predicted risk initially, their cases represented different statistically different time series configurations and admission patterns. Fluctuations in admission were associated with (mal)alignment of bodily health with psychosocial and environmental influences. However human interpretation was required to make sense of the patterns as presented by the multiple levels of data.

A human-centric model and framework for health journey monitoring illustrates the potential for ‘small’ personal experience data to inform clinical care in the era of big data predominantly based on biometrics and medical industrial process. ….(More)”.

Open data could have helped us learn from another mining dam disaster

Curated on Posted on by Stefaan Verhulst

Paulo A. de Souza Jr. at Nature: “The recent Brumadinho dam disaster in Brazil is an example of infrastructure failure with catastrophic consequences. Over 300 people were reported dead or missing, and nearly 400 more were rescued alive. The environmental impact is massive and difficult to quantify. The frequency of these disasters demonstrates that the current assets for monitoring integrity and generating alerting managers, authorities and the public to ongoing change in tailings are, in many cases, not working as they should. There is also the need for adequate prevention procedures. Monitoring can be perfect, but without timely and appropriate action, it will be useless. Good management therefore requires quality data. Undisputedly, management practices of industrial sites, including audit procedures, must improve, and data and metadata available from preceding accidents should be better used. There is a rich literature available about design, construction, operation, maintenance and decommissioning of tailing facilities. These include guidelines, standards, case studies, technical reports, consultancy and audit practices, and scientific papers. Regulation varies from country to country and in some cases, like Australia and Canada, it is controlled by individual state agencies. There are, however, few datasets available that are shared with the technical and scientific community more globally; particularly for prior incidents. Conspicuously lacking are comprehensive data related to monitoring of large infrastructures such as mining dams.

Today, Scientific Data published a Data Descriptor presenting a dataset obtained from 54 laboratory experiments on the breaching of fluvial dikes because of flow overtopping. (Re)use of such data can help improve our understanding of fundamental processes underpinning industrial infrastructure collapse (e.g., fluvial dike breaching, mining dam failure), and assess the accuracy of numerical models for the prediction of such incidents. This is absolutely essential for better management of floods, mitigation of dam collapses, and similar accidents. The authors propose a framework that could exemplify how data involving similar infrastructure can be stored, shared, published, and reused…(More)”.

Data Collaboration for the Common Good: Enabling Trust and Innovation Through Public-Private Partnerships

Curated on Posted on by Stefaan Verhulst

World Economic Forum Report: “As the digital technologies of the Fourth Industrial Revolution continue to drive change throughout all sectors of the global economy, a unique moment exists to create a more inclusive, innovative and resilient society. Central to this change is the use of data. It is abundantly available but if improperly used will be the source of dangerous and unwelcome results.

When data is shared, linked and combined across sectoral and institutional boundaries, a multiplier effect occurs. Connecting one bit with another unlocks new insights and understandings that often weren’t anticipated. Yet, due to commercial limits and liabilities, the full value of data is often unrealized. This is particularly true when it comes to using data for the common good. While public-private data collaborations represent an unprecedented opportunity to address some of the world’s most urgent and complex challenges, they have generally been small and limited in impact. An entangled set of legal, technical, social, ethical and commercial risks have created an environment where the incentives for innovation have stalled. Additionally, the widening lack of trust among individuals and institutions creates even more uncertainty. After nearly a decade of anticipation on the promise of public-private data collaboration – with relatively few examples of success at global scale – a pivotal moment has arrived to encourage progress and move forward….(More)”

(See also http://datacollaboratives.org/).

Data Trusts, Health Data, and the Professionalization of Data Management

Curated on Posted on by Stefaan Verhulst

Paper by Keith Porcaro: “This paper explores how trusts can provide a legal model for professionalizing health data management. Data is potential. Over time, data collected for one purpose can support others. Clinical records at a hospital, created to manage a patient’s care, can be internally analyzed to identify opportunities for process and safety improvements at a hospital, or externally analyzed with other records to identify optimal treatment patterns. Data also carries the potential for harm. Personal data can be leaked or exposed. Proprietary models can be used to discriminate against patients, or price them out of care.

As novel uses of data proliferate, an individual data holder may be ill-equipped to manage complex new data relationships in a way that maximizes value and minimizes harm. A single organization may be limited by management capacity or risk tolerance. Organizations across sectors have digitized unevenly or late, and may not have mature data controls and policies. Collaborations that involve multiple organizations may face coordination problems, or disputes over ownership.

Data management is still a relatively young field. Most models of external data-sharing are based on literally transferring data—copying data between organizations, or pooling large datasets together under the control of a third party—rather than facilitating external queries of a closely held dataset.

Few models to date have focused on the professional management of data on behalf of a data holder, where the data holder retains control over not only their data, but the inferences derived from their data. Trusts can help facilitate the professionalization of data management. Inspired by the popularity of trusts for managing financial investments, this paper argues that data trusts are well-suited as a vehicle for open-ended professional management of data, where a manager’s discretion is constrained by fiduciary duties and a trust document that defines the data holder’s goals…(More)”.

Publics in Emerging Economies Worry Social Media Sow Division, Even as They Offer New Chances for Political Engagement

Curated on Posted on by Stefaan Verhulst

Aaron Smith, Laura Silver, Courtney Johnson, Kyle Taylor and Jingjing Jiang at Pew Research: “In recent years, the internet and social media have been integral to political protests, social movements and election campaigns around the globe. Events from the Arab Spring to the worldwide spread of#MeToo have been aided by digital connectivity in both advanced and emerging economies. But popular social media and messaging platforms like Facebook and WhatsApp have drawn attention for their potential role in spreading misinformation, facilitating political manipulation by foreign and domestic actors, and increasing violence and hate crimes.

Recently, the Sri Lankan government shut down several of the country’s social media and messaging services immediately after Easter day bombings at Catholic churches killed and wounded hundreds. Some technology enthusiasts praised the decision but wondered if this development marked a change from pro-democracy, Arab Spring-era hopes that digital technology would be a liberating tool to a new fear that it has become “a force that can corrode” societies.

In the context of these developments, a Pew Research Center survey of adults in 11 emerging economies finds these publics are worried about the risks associated with social media and other communications technologies – even as they cite their benefits in other respects. Succinctly put, the prevailing view in the surveyed countries is that mobile phones, the internet and social media have collectively amplified politics in both positive and negative directions – simultaneously making people more empowered politically andpotentially more exposed to harm.

Chart showing that people in emerging economies see social media giving them political voice but also increasing the risk of manipulation.

When it comes to the benefits, adults in these countries see digital connectivity enhancing people’s access to political information and facilitating engagement with their domestic politics. Majorities in each country say access to the internet, mobile phones and social media has made people more informed about current events, and majorities in most countries believe social media have increased ordinary people’s ability to have a meaningful voice in the political process. Additionally, half or more in seven of these 11 countries say technology has made people more accepting of those who have different views than they do.

But these perceived benefits are frequently accompanied by concerns about the limitations of technology as a tool for political action or information seeking. Even as many say social media have increased the influence of ordinary people in the political process, majorities in eight of these 11 countries feel these platforms have simultaneously increased the risk that people might be manipulated by domestic politicians. Around half or more in eight countries also think these platforms increase the risk that foreign powers might interfere in their country’s elections….(More)”.

How Cold Is That Library? There’s a Google Doc for That

Curated on Posted on by Stefaan Verhulst

Colleen Flaherty at Inside Higher Ed: “What a difference preparation makes when it comes to doing research in Arctic-level air-conditioned academic libraries (or ones that are otherwise freezing — or not air-conditioned at all). Luckily, Megan L. Cook, assistant professor of English at Colby College, published a crowdsourced document called“How Cold Is that Library?” ….

Cook, who was not immediately available for comment, has said the document was group effort. Juliet Sperling, a faculty fellow in American art at Colby, credited her colleague’s “brilliance” but said the document was “generally inspired by conversations we’ve had as co-fellows” in the Andrew W. Mellon Society of Fellows in Critical Bibliography. The society brings together 60-some scholars of rare books and material texts from a variety of disciplinary or institutional approaches, she said, “so collectively, we’ve all spent quite a bit of time in libraries of various climates all over the world.” In addition to library temperatures, lighting and even humidity levels, the scholars trade research destinations’ photo policies and nearby eateries and drinking holes, among other tips. A spreadsheet opens up that resource to others, Sperling said. …(More)”.