Widespread Internet use offers unprecedented opportunities to study human behavior at scale, yet researchers face significant ethical and technical barriers when attempting to collect data for academic studies.
No shortcuts to research information citizenship - Digital Science
Being open isn't enough - true "research information citizenship" requires a robust, genuinely open research infrastructure.
Gathering the Custodians of the Internet: Lessons from the First CivilServant Summit - Citizens and Technology Lab
An agenda for citizen behavioral science to maintain and protect the communities we love online.
Home | Bellingcat's Online Investigation Toolkit
A toolkit for open source researchers
A Former Google Engineer Built a Search Engine for Finding Every Privacy Violation You Face Online
Former Google engineer Tim Libert is releasing a search engine, webXray, that aims to find illicit online data collection and tracking—with the goal of becoming “the Henry Ford of tech lawsuits.”
MyData
The human-centric approach to data is aimed at a fair, sustainable, and prosperous digital society. In such a society, people get value from their data and set the agenda on how it is used. And for organisations, the ethical use of data is always the most attractive option.
Online harms research publications: December 2022
This is a selection of research reports to enhance the online harms evidence base. This research has helped improve understanding of harms experienced by adults and children, as well as how online harm can be measured.
Can “Conscious Data Contribution” Help Users to Exert “Data Leverage” Against Technology Companies?
Tech users currently have limited ability to act on concerns regarding the negative societal impacts of large tech companies. However, recent work suggests that users can exert leverage using their role in the generation of valuable data, for instance by withholding their data contributions to intelligent technologies. We propose and evaluate a new means to exert this type of leverage against tech companies: "conscious data contribution" (CDC).
What you can do with AT Protocol - Applied Meteorology
Years of centralized platforms have limited our thinking about what's possible on the web.
What you can do with AT Protocol - Applied Meteorology
Years of centralized platforms have limited our thinking about what's possible on the web.
Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem
Background: Crowdsourced health research studies are the nexus of three contemporary trends: 1) citizen science (non-professionally trained individuals conducting science-related activities); 2) crowdsourcing (use of web-based technologies to recruit project participants); and 3) medicine 2.0 / health 2.0 (active participation of individuals in their health care particularly using web 2.0 technologies). Crowdsourced health research studies have arisen as a natural extension of the activities of health social networks (online health interest communities), and can be researcher-organized or participant-organized. In the last few years, professional researchers have been crowdsourcing cohorts from health social networks for the conduct of traditional studies. Participants have also begun to organize their own research studies through health social networks and health collaboration communities created especially for the purpose of self-experimentation and the investigation of health-related concerns. Objective: The objective of this analysis is to undertake a comprehensive narrative review of crowdsourced health research studies. This review will assess the status, impact, and prospects of crowdsourced health research studies. Methods: Crowdsourced health research studies were identified through a search of literature published from 2000 to 2011 and informal interviews conducted 2008-2011. Keyword terms related to crowdsourcing were sought in Medline/PubMed. Papers that presented results from human health studies that included crowdsourced populations were selected for inclusion. Crowdsourced health research studies not published in the scientific literature were identified by attending industry conferences and events, interviewing attendees, and reviewing related websites. Results: Participatory health is a growing area with individuals using health social networks, crowdsourced studies, smartphone health applications, and personal health records to achieve positive outcomes for a variety of health conditions. PatientsLikeMe and 23andMe are the leading operators of researcher-organized, crowdsourced health research studies. These operators have published findings in the areas of disease research, drug response, user experience in crowdsourced studies, and genetic association. Quantified Self, Genomera, and DIYgenomics are communities of participant-organized health research studies where individuals conduct self-experimentation and group studies. Crowdsourced health research studies have a diversity of intended outcomes and levels of scientific rigor. Conclusions: Participatory health initiatives are becoming part of the public health ecosystem and their rapid growth is facilitated by Internet and social networking influences. Large-scale parameter-stratified cohorts have potential to facilitate a next-generation understanding of disease and drug response. Not only is the large size of crowdsourced cohorts an asset to medical discovery, too is the near-immediate speed at which medical findings might be tested and applied. Participatory health initiatives are expanding the scope of medicine from a traditional focus on disease cure to a personalized preventive approach. Crowdsourced health research studies are a promising complement and extension to traditional clinical trials as a model for the conduct of health research.
Custodians of the Internet
A revealing and gripping investigation into how social media platforms police what we post online—and the large societal impact of these decisions Most use...
Living in Data: A Citizen's Guide to a Better Information Future (Paperback)
Jer Thorp’s analysis of the word “data” in 10,325 New York Times stories written between 1984 and 2018 shows a distinct trend: among the words most closely associated with “data,” we find not only its classic companions “information” and “digital,” but also a variety of new neighbors—from “scandal” and “misinformation” to “ethics,” “friends,” and “play.”To live in data in the twenty-first century
THREAD The first full year of tracking research on @bsky.app Hi, we are Altmetric, and we track how research is communicated across the web. We now have one full calendar year of Bluesky research data and thought we'd have a looksie.
#SciComment I'm curious to know... ❓If you evaluate papers online using PubPeer, blogs, microblogging services, personal websites, etc... why do you like certain technologies over others? 🤔 What prevents you from using PubPeer or ResearcHub instead of other transient or hard-to-find platforms?
New study finds that when people help collect data or contribute to research it can build public trust by making scientists feel personally familiar and approachable, and that trust then spreads to how local and tangible the research feels. jcom.sissa.it/article/pubid/JCOM_2506_2026_…
How can citizen science reduce psychological distance to science? Insights from three projects in contested environmental contexts
jcom.sissa.it
