Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations

Paper by Alison Paprica et al: “Around the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data governance and management, in 2020 members of our team published 12 minimum specification essential requirements (min specs) to provide practical guidance for organisations establishing or operating data trusts and other forms of data infrastructure… We convened an international team, consisting mostly of participants from Canada and the United States of America, to test and refine the original 12 min specs. Twenty-three (23) data-focused organisations and initiatives recorded the various ways they address the min specs. Sub-teams analysed the results, used the findings to make improvements to the min specs, and identified materials to support organisations/initiatives in addressing the min specs.
Analyses and discussion led to an updated set of 15 min specs covering five categories: one min spec for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. Multiple changes were made to make the min specs language more technically complete and precise. The updated set of 15 min specs has been integrated into a Canadian national standard that, to our knowledge, is the first to include requirements for public engagement and Indigenous Data Sovereignty…(More)”.

Citizens’ Assemblies in Los Angeles Could Be The Art Of The Possible

Article by Susana F. Molina: “At the end of his career, the physician and playwright Wayne Liebman has painstakingly entered a strategic race to advocate for citizens’ assemblies – “throwing spaghetti to the wall, and waiting to see what sticks. If something sticks, it’s where I go” as he describes it. His frequent use of metaphors filled a spirited conversation over Zoom last week.

Liebman hadn’t been an activist to his core – the last time he was that active was during the anti-war movement – but the 2016 election left him with no other choice, he says. He retired from medicine and became a full-time activist. Nothing that he had anticipated. 

He began to get involved, in a partisan way, to help regain some political power, at least, in Congress. But, in the midst of the storming of the US capitol, “as I felt like I had thrown a ladder at the castle wall,” he continues, “what I realized is that I have thrown it to the wrong wall.” Liebman’s deep exposure to elections and politicians made him realize that he couldn’t trust the system anymore, “in fact it was the system that had gotten us to the point where we were at,” he says.

According to RepresentUs, America’s leading anti-corruption organization, only 4% of Americans currently have a great deal of confidence in Congress. Significantly, a growing number of democracy advocate organizations are sprouting out around the country to fix, what they call, a broken political system. “Unfortunately what they mean by that, is to try to fix how elections work,” says Liebman. “But this is like lipstick on a pig.” Australia has already instituted all kinds of reforms and still Australians are completely dissatisfied with how politicians run their country.

Liebman started to read about direct democracy, citizens’ assemblies and lottery selected panels. While in representative democracies like in the US people vote for representatives who execute policies and laws, direct democracy models allocate more power to people because they include citizens’ recommendations into the policy-making decision process.

“I quickly became a convert,” he admits. In 2020 Liebman founded the nonpartisan nonprofit organization Public Access Democracy in Los Angeles to educate the public about democratic lotteries and advocate for the implementation of citizens’ assemblies. Currently, one minute at the microphone at an open City Council Meeting depicts a bizarre moment in a bleak democracy landscape. Introducing citizens’ assemblies — where a randomly selected group of citizens hears expert evidence then deliberates — would boost participation on difficult issues and solutions that people have already embraced voluntarily and have built consensus…(More)”.

What Big Tech Knows About Your Body

Article by Yael Grauer: “If you were seeking online therapy from 2017 to 2021—and a lot of people were—chances are good that you found your way to BetterHelp, which today describes itself as the world’s largest online-therapy purveyor, with more than 2 million users. Once you were there, after a few clicks, you would have completed a form—an intake questionnaire, not unlike the paper one you’d fill out at any therapist’s office: Are you new to therapy? Are you taking any medications? Having problems with intimacy? Experiencing overwhelming sadness? Thinking of hurting yourself? BetterHelp would have asked you if you were religious, if you were LGBTQ, if you were a teenager. These questions were just meant to match you with the best counselor for your needs, small text would have assured you. Your information would remain private.

Except BetterHelp isn’t exactly a therapist’s office, and your information may not have been completely private. In fact, according to a complaint brought by federal regulators, for years, BetterHelp was sharing user data—including email addresses, IP addresses, and questionnaire answers—with third parties, including Facebook and Snapchat, for the purposes of targeting ads for its services. It was also, according to the Federal Trade Commission, poorly regulating what those third parties did with users’ data once they got them. In July, the company finalized a settlement with the FTC and agreed to refund $7.8 million to consumers whose privacy regulators claimed had been compromised. (In a statement, BetterHelp admitted no wrongdoing and described the alleged sharing of user information as an “industry-standard practice.”)

We leave digital traces about our health everywhere we go: by completing forms like BetterHelp’s. By requesting a prescription refill online. By clicking on a link. By asking a search engine about dosages or directions to a clinic or pain in chest dying. By shopping, online or off. By participating in consumer genetic testing. By stepping on a smart scale or using a smart thermometer. By joining a Facebook group or a Discord server for people with a certain medical condition. By using internet-connected exercise equipment. By using an app or a service to count your steps or track your menstrual cycle or log your workouts. Even demographic and financial data unrelated to health can be aggregated and analyzed to reveal or infer sensitive information about people’s physical or mental-health conditions…(More)”.

The Man Who Trapped Us in Databases

McKenzie Funk in The New York University: “One of Asher’s innovations — or more precisely one of his companies’ innovations — was what is now known as the LexID. My LexID, I learned, is 000874529875. This unique string of digits is a kind of shadow Social Security number, one of many such “persistent identifiers,” as they are called, that have been issued not by the government but by data companies like Acxiom, Oracle, Thomson Reuters, TransUnion — or, in this case, LexisNexis.

My LexID was created sometime in the early 2000s in Asher’s computer room in South Florida, as many still are, and without my consent it began quietly stalking me. One early data point on me would have been my name; another, my parents’ address in Oregon. From my birth certificate or my driver’s license or my teenage fishing license — and from the fact that the three confirmed one another — it could get my sex and my date of birth. At the time, it would have been able to collect the address of the college I attended, Swarthmore, which was small and expensive, and it would have found my first full-time employer, the National Geographic Society, quickly amassing more than enough data to let someone — back then, a human someone — infer quite a bit more about me and my future prospects…(More)”

More Companies Are Disclosing Their ESG Data, but Confusion on How Persists

Article by David Breg: “Public companies in the U.S. are increasingly disclosing sustainability information, but many say they find it a challenge to report fundamental climate data that many regulators around the globe likely will require under incoming mandatory reporting standards

Nearly two-thirds of respondents said their company was disclosing environmental, social and governance information, up from 56% in the prior year, according to the annual survey of sustainability officials that WSJ Pro conducted this spring.

However, there was little consensus on which framework to use and respondents highlighted three fundamental types of information as their three biggest environmental reporting challenges: Greenhouse-gas emissions, climate-change risk and energy management.

The proportion of companies disclosing sustainability and ESG information was 63%, up from 56% last year. Those that don’t yet report this data but plan to was 16%, down from 25% last year. About one-fifth of respondents said their organization had no plans to report their progress, virtually unchanged from last year. Breaking that down, a quarter of private companies don’t plan any ESG reporting, while only 7% of public companies felt the same.

Regulators around the globe are finalizing rules that would require companies to publish standardized information after years of patchy voluntary ESG reporting based on a host of frameworks. California’s governor has said he would soon sign that state’s requirements into law. The U.S. Securities and Exchange Commission’s rules are expected later this year. European regulations are already in place and many other countries are also working on standards. The International Sustainability Standards Board hopes its climate framework, completed this past summer, becomes the global baseline

While it is mostly public companies that face mandatory requirements, even private businesses face increased scrutiny of their sustainability and ESG policies from stakeholders including shareholders, eco-conscious consumers, suppliers, insurers and lenders…(More)”.

Disinformation and Civic Tech Research

Code for All Playbook: “”The Disinformation and Civic Tech Playbook is a tool for people who are interested in understanding how civic tech can help confront disinformation. This guide will help you successfully advocate for, and implement disinfo-fighting tools, programs, and campaigns from partners around the world.

In order to effectively fight misinformation at a societal scale, three stages of work must be completed in sequential order:

  1. Monitor or research media environment (traditional, social, and/or messaging apps) for misinformation
  2. Verify and/or debunk
  3. Reach people with the truth and counter-message falsehoods

These stages ascend from least impactful to most impactful activity.

Researching misinformation in the media environment has no effect whatsoever on its own. Verifying and debunking falsehoods have limited utility unless stage three is also achieved: successfully reaching communities with true information in a way that gets through to them, and effectively counter-messaging the misinformation that spreads so easily.

Unfortunately, the distribution of misinformation management projects to date seems to be the exact inverse of these stages. There has been an enormous amount of work to passively monitor and research media environments for misinformation. There is also a large amount of energy and resources dedicated to verifying and debunking misinformation through traditional fact-checking approaches. Whether because it’s the hardest one to solve or just third in the consecutive sequence, relatively few misinformation management projects have made it to the final stage of genuinely getting through to people and experimenting with effective counter-messaging and counter-engagement (see The Sentinel Project interview for further discussion)…(More)”.

Liar in a Crowded Theater

Book by Jeff Kosseff: “When commentators and politicians discuss misinformation, they often repeat five words: “fire in a crowded theater.” Though governments can, if they choose, attempt to ban harmful lies, propaganda, misinformation, and disinformation, how effective will their efforts really be? Can they punish someone for yelling “fire” in a crowded theater—and would those lies then have any less impact? How do governments around the world respond to the spread of misinformation, and when should the US government protect the free speech of liars?

In Liar in a Crowded Theater, law professor Jeff Kosseff addresses the pervasiveness of lies, the legal protections they enjoy, the harm they cause, and how to combat them. From the COVID-19 pandemic to the 2016 and 2020 presidential elections and the January 6, 2021, insurrection on the Capitol building, Kosseff argues that even though lies can inflict huge damage, US law should continue to protect them. Liar in a Crowded Theater explores both the history of protected falsehoods and where to go from here.

Drawing on years of research and thousands of pages of court documents in dozens of cases—from Alexander Hamilton’s enduring defense of free speech to Eminem’s victory in a lawsuit claiming that he stretched the truth in a 1999 song—Kosseff illustrates not only why courts are reluctant to be the arbiters of truth but also why they’re uniquely unsuited to that role. Rather than resorting to regulating speech and fining or jailing speakers, he proposes solutions that focus on minimizing the harms of misinformation. If we want to seriously address concerns about misinformation and other false speech, we must finally exit the crowded theater…(More)”.

Sharing Health Data: The Why, the Will, and the Way Forward.

Book edited by Grossmann C, Chua PS, Ahmed M, et al. : “Sharing health data and information1 across stakeholder groups is the bedrock of a learning health system. As data and information are increasingly combined across various sources, their generative value to transform health, health care, and health equity increases significantly. Facilitating this potential is an escalating surge of digital technologies (i.e., cloud computing, broadband and wireless solutions, digital health technologies, and application programming interfaces [APIs]) that, with each successive generation, not only enhance data sharing, but also improve in their ability to preserve privacy and identify and mitigate cybersecurity risks. These technological advances, coupled with notable policy developments, new interoperability standards (particularly the Fast Healthcare Interoperability Resources [FHIR] standard), and the launch of innovative payment models within the last decade, have resulted in a greater recognition of the value of health data sharing among patients, providers, and researchers. Consequently, a number of data sharing collaborations are emerging across the health care ecosystem.

Unquestionably, the COVID-19 pandemic has had a catalytic effect on this trend. The criticality of swift data exchange became evident at the outset of the pandemic, when the scientific community sought answers about the novel SARS-CoV-2 virus and emerging disease. Then, as the crisis intensified, data sharing graduated from a research imperative to a societal one, with a clear need to urgently share and link data across multiple sectors and industries to curb the effects of the pandemic and prevent the next one.

In spite of these evolving attitudes toward data sharing and the ubiquity of data-sharing partnerships, barriers persist. The practice of health data sharing occurs unevenly, prominent in certain stakeholder communities while absent in others. A stark contrast is observed between the volume, speed, and frequency with which health data is aggregated and linked—oftentimes with non-traditional forms of health data—for marketing purposes, and the continuing challenges patients experience in contributing data to their own health records. In addition, there are varying levels of data sharing. Not all types of data are shared in the same manner and at the same level of granularity, creating a patchwork of information. As highlighted by the gaps observed in the haphazard and often inadequate sharing of race and ethnicity data during the pandemic, the consequences can be severe—impacting the allocation of much-needed resources and attention to marginalized communities. Therefore, it is important to recognize the value of data sharing in which stakeholder participation is equitable and comprehensive— not only for achieving a future ideal state in health care, but also for redressing long-standing inequities…(More)”

The Secret Solution To Increasing Resident Trust

Report by CivicPlus: “We surveyed over 16,000 Americans to determine what factors most impacted community members in fostering feelings of trust in their local government. We found that residents in communities with digital resident self-service technology are more satisfied with their local government than residents still dependent on analog interactions to obtain government services. Residents in technology-forward communities also tend to be more engaged civic participants…(More)”.

How citywide data strategies can connect the dots, drive results

Blog by Bloomberg Cities Network: “Data is more central than ever to improving service delivery, managing performance, and identifying opportunities that better serve residents. That’s why a growing number of cities are adding a new tool to their arsenal—the citywide data strategy—to provide teams with a holistic view of data efforts and then lay out a roadmap for scaling successful approaches throughout city hall.

These comprehensive strategies are increasingly “critical to help mayors reach their visions,” according to Amy Edward Holmes, executive director The Bloomberg Center for Government Excellence at John Hopkins University, which is helping dozens of cities across the Americas up their data games as part of the Bloomberg Philanthropies City Data Alliance (CDA).

Bloomberg Cities spoke with experts in the field and leaders in pioneering cities to learn more about the importance of citywide data strategies and how they can help:

  • Turn “pockets of promise” into citywide strengths;
  • Build upon and consolidate other citywide strategic efforts; 
  • Improve performance management and service delivery;
  • Align staff data capabilities with city needs;
  • Drive lasting cultural change through leadership commitment…(More)”.