Data Sharing of Imaging in an Evolving Health Care World: Report of the ACR Data Sharing Workgroup Part 2: Annotation, Curation, and Contracting – Journal of the American College of Radiology

Abstract:  A core principle of ethical data sharing is maintaining the security and anonymity of the data, and care must be taken to ensure medical records and images cannot be reidentified to be traced back to patients or misconstrued as a breach in the trust between health care providers and patients. Once those principles have been observed, those seeking to share data must take the appropriate steps to curate the data in a way that organizes the clinically relevant information so as to be useful to the data sharing party, assesses the ensuing value of the data set and its annotations, and informs the data sharing contracts that will govern use of the data. Embarking on a data sharing partnership engenders a host of ethical, practical, technical, legal, and commercial challenges that require a thoughtful, considered approach. In 2019 the ACR convened a Data Sharing Workgroup to develop philosophies around best practices in the sharing of health information. This is Part 2 of a Report on the workgroup’s efforts in exploring these issues.

 

Demand five precepts to aid social-media watchdogs

“I propose the following. First, give researchers access to the same targeting tools that platforms offer to advertisers and commercial partners. Second, for publicly viewable content, allow researchers to combine and share data sets by supplying keys to application programming interfaces. Third, explicitly allow users to donate data about their online behaviour for research, and make code used for such studies publicly reviewable for security flaws. Fourth, create safe-haven protections that recognize the public interest. Fifth, mandate regular audits of algorithms that moderate content and serve ads….

Part of the solution is to create legal systems, not just technical ones, that distinguish between bad intent and legitimate, public-spirited research that can help to uncover social media’s effects on economies and societies.

 

The influence of social-media companies is undeniable, and executives such as Facebook co-founder Mark Zuckerberg sincerely believe that their platforms make the world a better place. But they have been unwilling to give researchers the data to demonstrate whether this is so. It is time for society to demand access to those data.”

Seminar.net special issue: Digital Capitalism, Datafication, and Media Education – Critical Perspectives | Seminar.net

As digitization and datafication continue to extend into all areas of society, digital capitalism becomes equally ubiquitous and universal. Digital capitalism, and related phenomena such as data, surveillance or platform capitalism, operate on the basis of a comprehensive expropriation and exploitation of personal data profiles. It functionalizes life worlds and places of education to an unprecedented extent.

This special issue is responding to the following questions: What position/s can media education in research and application take to respond to these developments? Which theories, concepts and methods help to formulate adequate analytical, critical and transformative answers?

Interview: Dr. Daniel Simons, editor of Advances in Methods and Practices in Psychological Science (AMPPS) on how to “get started” with open science practices

“We asked Dr. Daniel Simons, editor of AMPPS and Professor of Psychology at the University of Illinois at Urbana-Champaign, to share his thoughts on the role of journals in advancing open sciences practices, his experience implementing AMPPS’ rigorous standards, and his advice for researchers and editors on advancing a vision of increasingly transparent research in academia….”

Interview: Dr. Daniel Simons, editor of Advances in Methods and Practices in Psychological Science (AMPPS) on how to “get started” with open science practices

“We asked Dr. Daniel Simons, editor of AMPPS and Professor of Psychology at the University of Illinois at Urbana-Champaign, to share his thoughts on the role of journals in advancing open sciences practices, his experience implementing AMPPS’ rigorous standards, and his advice for researchers and editors on advancing a vision of increasingly transparent research in academia….”

Integrating Qualitative Methods and Open Science: Five Principles for More Trustworthy Research* | Journal of Communication | Oxford Academic

Abstract:  Recent initiatives toward open science in communication have prompted vigorous debate. In this article, we draw on qualitative and interpretive research methods to expand the key priorities that the open science framework addresses, namely producing trustworthy and quality research. This article contributes to communication research by integrating qualitative methodological literature with open communication science research to identify five broader commitments for all communication research: validity, transparency, ethics, reflexivity, and collaboration. We identify key opportunities where qualitative and quantitative communication scholars can leverage the momentum of open science to critically reflect on and improve our knowledge production processes. We also examine competing values that incentivize dubious practices in communication research, and discuss several metascience initiatives to enhance diversity, equity, and inclusion in our field and value multiple ways of knowing.

 

Being transparent & privacy aware: ditching third-party trackers in Strathprints | Open Access @ Strathclyde

 

George Macgregor
Scholarly Publications & Research Data, University of Strathclyde

Over the years, and like a lot of websites, Strathprints has historically made use of third-party integrations. Some of these integrations have provided us, and Strathprints users, with useful functionality over the years. But because these integrations involve the implementation of tracking code within Strathprints, they have also entailed third-party cookies being attached to our users. This is most notable in our use of Google Analytics and AddThis, the former providing analytics on web traffic and the latter providing convenient social sharing buttons and web analytics. In fact, the Google Analytics Tracking Code (GATC) also entails the DoubleClick cookie used to enable remarketing for products like Google Ads, while AddThis engages in browser fingerprinting.

Given the tracking that is increasing occurring within the scholarly publishing industry generally, and the sometimes-nefarious purposes to which the collected data are being put, we feel it is inappropriate for an open repository like Strathprints to continue to use additional and unnecessary forms of tracking. We have therefore recently removed Google Analytics from Strathprints altogether and have implemented alternative social sharing options to replace AddThis. An additional benefit of removing these tools is that Strathprints is serving less Javascript, which helps to promote quicker page loading – so the benefits go beyond superior privacy to include a better user experience!

[…]

SDSC’s Open Science Chain Awarded $500,000 NSF Grant

The Open Science Chain program at the San Diego Supercomputer Center (SDSC) at UC San Diego has been awarded a $500,000 National Science Foundation (NSF) grant for providing a secure method to efficiently share and verify data and metadata while maintaining privacy restrictions necessary for the reuse of the scientific data.

Commission adopts adequacy decisions for the UK | European Union

 EU Press Release, June 28, 2021:

The Commission has today adopted two adequacy decisions for the United Kingdom – one under the General Data Protection Regulation (GDPR) and the other for the Law Enforcement Directive. Personal data can now flow freely from the European Union to the United Kingdom where it benefits from an essentially equivalent level of protection to that guaranteed under EU law. The adequacy decisions also facilitate the correct implementation of the EU-UK Trade and Cooperation Agreement, which foresees the exchange of personal information, for example for cooperation on judicial matters. Both adequacy decisions include strong safeguards in case of future divergence such as a ‘sunset clause’, which limits the duration of adequacy to four years.

Now available: Open educational resource of Building Legal Literacies for Text Data Mining – UC Berkeley Library Update

“Last summer we hosted the Building Legal Literacies for Text Data Mining institute. We welcomed 32 digital humanities researchers and professionals to the weeklong virtual training, with the goal to empower them to confidently navigate law, policy, ethics, and risk within digital humanities text data mining (TDM) projects. Building Legal Literacies for Text Data Mining (Building LLTDM) was made possible through a grant from the National Endowment for the Humanities. 

Since the remote institute in June 2020, the participants and project team reconvened in February 2021 to discuss how participants had been thinking about, performing, or supporting TDM in their home institutions and projects with the law and policy literacies in mind.

To maximize the reach and impact of Building LLTDM, we have now published a comprehensive open educational resource (OER) of the contents of the institute. The OER covers copyright (both U.S. and international law), technological protection measures, privacy, and ethical considerations. It also helps other digital humanities professionals and researchers run their own similar institutes by describing in detail how we developed and delivered programming (including our pedagogical reflections and take-aways), and includes ideas for hosting shorter literacy teaching sessions. The resource (available as a web-book or in downloadable formats such as PDF, EPUB, and MOBI) is in the public domain under the CC0 Public Domain Dedication, meaning it can be accessed, reused, and repurposed without restriction. …”

Texas Adopts Transparency Measure for Automatic Textbook Billing – SPARC

“The U.S. state of Texas has enacted the nation’s first law to increase transparency for automatic textbook billing programs. Sponsored by Representative Tan Parker and Senator Brandon Creighton, House Bill 1027 received bipartisan approval from the state legislature last month and was signed into law by Governor Greg Abbot last week.

Often marketed using the term “inclusive access,” automatic textbook billing is the practice of charging the cost of digital course materials to a student’s tuition and fee bill. While some of these programs are implemented on a voluntary “opt-in” basis, others are implemented without confirming a student’s consent, which can lead to unexpected charges and limited ability to seek cost-saving alternatives such as used books. Moreover, these programs effectively force students to accept the publisher’s terms of service, which can open the door to the extensive collection and processing of their personal data….”

Gelenkte Wissenschaft: Die DFG warnt vor Einfluss des Plattformkapitalismus (“Guiding” science: DFG warns against influence of platform capitalism) | Frankfurter Allgemeine

German Research Foundation warns against the growing influence of major publishers on research. Scientific freedom is under threat from two sides.

 

 

Die Deutsche Forschungsgemeinschaft warnt vor dem wachsenden Einfluss der Großverlage auf die Forschung. Die Wissenschaftsfreiheit ist hier von zwei Seiten bedroht.

Qualitative data are shareable – Open Science Future

“Three key learnings:

Sharing qualitative data does not mean depositing them somewhere on the internet.
Sharing qualitative data through data repositories enables controlling secondary use and is safe.
Research data archives offer help in processing data for reuse and some even offer financial support….”

Joint Statement on transparency and data integrity International Coalition of Medicines Regulatory Authorities (ICMRA) and WHO

“ICMRA1 and WHO call on the pharmaceutical industry to provide wide access to clinical data for all new medicines and vaccines (whether full or conditional approval, under emergency use, or rejected). Clinical trial reports should be published without redaction of confidential information for reasons of overriding public health interest….

Regulators continue to spend considerable resources negotiating transparency with sponsors. Both positive and negative clinically relevant data should be made available, while only personal data and individual patient data should be redacted. In any case, aggregated data are unlikely to lead to re-identification of personal data and techniques of anonymisation can be used….

 

Providing systematic public access to data supporting approvals and rejections of medicines reviewed by regulators, is long overdue despite existing initiatives, such as those from the European Medicines Agency and Health Canada. The COVID-19 pandemic has revealed how essential to public trust access to data is. ICMRA and WHO call on the pharmaceutical industry to commit, within short timelines, and without waiting for legal changes, to provide voluntary unrestricted access to trial results data for the benefit of public health.”