Report by Hannah Chafetz, Sampriti Saxena, Adrienne Schmoeker, Stefaan G. Verhulst, & Andrew J. Zahuranec: “… Joined by experts across several domains including smart cities, the law, and data ecosystem, this effort was focused on developing solutions that could improve the design of Data Sharing Agreements…we assessed what is needed to implement each aspect of our Contractual Wheel of Data Collaboration–a tool developed as a part of the Contracts for Data Collaborations initiative that seeks to capture the elements involved in data collaborations and Data Sharing Agreements. In what follows, we provide key suggestions from this Action Lab… The... (More >)
To harness telecom data for good, there are six challenges to overcome
Blog by Anat Lewin and Sveta Milusheva: “The global use of mobile phones generates a vast amount of data. What good can be done with these data? During the COVID-19 pandemic, we saw that aggregated data from mobile phones can tell us where groups of humans are going, how many of them are there, and how they are behaving as a cluster. When used effectively and responsibly, mobile phone data can be immensely helpful for development work and emergency response — particularly in resource-constrained countries. For example, an African country that had, in recent years, experienced a cholera outbreak... (More >)
Data Collaborative Case Study: NYC Recovery Data Partnership
Report by the Open Data Policy Lab (The GovLab): “In July 2020, following severe economic and social losses due to the COVID-19 pandemic, the administration of New York City Mayor Bill de Blasio announced the NYC Recovery Data Partnership. This data collaborative asked private and civic organizations with assets relevant to New York City to provide their data to the city. Senior city leaders from the First Deputy Mayor’s Office, the Mayor’s Office of Operations, Mayor’s Office of Information Privacy and Mayor’s Office of Data Analytics formed an internal coalition which served as trusted intermediaries, assessing agency requests from... (More >)
Ten (not so) simple rules for clinical trial data-sharing
Paper by Claude Pellen et al: “Clinical trial data-sharing is seen as an imperative for research integrity and is becoming increasingly encouraged or even required by funders, journals, and other stakeholders. However, early experiences with data-sharing have been disappointing because they are not always conducted properly. Health data is indeed sensitive and not always easy to share in a responsible way. We propose 10 rules for researchers wishing to share their data. These rules cover the majority of elements to be considered in order to start the commendable process of clinical trial data-sharing: Rule 1: Abide by local legal... (More >)
Examining public views on decentralised health data sharing
Paper by Victoria Neumann et al: “In recent years, researchers have begun to explore the use of Distributed Ledger Technologies (DLT), also known as blockchain, in health data sharing contexts. However, there is a significant lack of research that examines public attitudes towards the use of this technology. In this paper, we begin to address this issue and present results from a series of focus groups which explored public views and concerns about engaging with new models of personal health data sharing in the UK. We found that participants were broadly in favour of a shift towards new decentralised... (More >)
Toward a 21st Century National Data Infrastructure: Mobilizing Information for the Common Good
Report by National Academies of Sciences, Engineering, and Medicine: “Historically, the U.S. national data infrastructure has relied on the operations of the federal statistical system and the data assets that it holds. Throughout the 20th century, federal statistical agencies aggregated survey responses of households and businesses to produce information about the nation and diverse subpopulations. The statistics created from such surveys provide most of what people know about the well-being of society, including health, education, employment, safety, housing, and food security. The surveys also contribute to an infrastructure for empirical social- and economic-sciences research. Research using survey-response data, with... (More >)
Ten lessons for data sharing with a data commons
Article by Robert L. Grossman: “..Lesson 1. Build a commons for a specific community with a specific set of research challenges Although there are a few data repositories that serve the general scientific community that have proved successful, in general data commons that target a specific user community have proven to be the most successful. The first lesson is to build a data commons for a specific research community that is struggling to answer specific research challenges with data. As a consequence, a data commons is a partnership between the data scientists developing and supporting the commons and the... (More >)
Satellite data: The other type of smartphone data you might not know about
Article by Tommy Cooke et al: “Smartphones determine your location in several ways. The first way involves phones triangulating distances between cell towers or Wi-Fi routers. The second way involves smartphones interacting with navigation satellites. When satellites pass overhead, they transmit signals to smartphones, which allows smartphones to calculate their own location. This process uses a specialized piece of hardware called the Global Navigation Satellite System (GNSS) chipset. Every smartphone has one. When these GNSS chipsets calculate navigation satellite signals, they output data in two standardized formats (known as protocols or languages): the GNSS raw measurement protocol and the... (More >)
Data sharing during coronavirus: lessons for government
Report by Gavin Freeguard and Paul Shepley: “This report synthesises the lessons from six case studies and other research on government data sharing during the pandemic. It finds that current legislation, such as the Digital Economy Act and UK General Data Protection Regulation (GDPR), does not constitute a barrier to data sharing and that while technical barriers – incompatible IT systems, for example – can slow data sharing, they do not prevent it. Instead, the pandemic forced changes to standard working practice that enabled new data sharing agreements to be created quickly. This report focuses on what these changes... (More >)
How an Open-Source Disaster Map Helped Thousands of Earthquake Survivors
Article by Eray Gündoğmuş: “On February 6, 2023, earthquakes measuring 7.7 and 7.6 hit the Kahramanmaraş region of Turkey, affecting 10 cities and resulting in more than 42.000 deaths and 120.000 injuries as of February 21. In the hours following the earthquake, a group of programmers quickly become together on the Discord server called “Açık Yazılım Ağı” , inviting IT professionals to volunteer and develop a project that could serve as a resource for rescue teams, earthquake survivors, and those who wanted to help: afetharita.com. It literally means “disaster map”. As there was a lack of preparation for the... (More >)
