Beyond APIs: Collecting Web Data for Research using the National Internet Observatory

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.

Other Internet

Applied Research

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).

Guest Post — Exploring Data Spaces in Scholarly Communications - The Scholarly Kitchen

Today's guest post explains the new data space pilot, which will be the focus of the upcoming BISG/SSP webinar on May 12, 2026.

Facebook–Cambridge Analytica data scandal

The data was collected through an app called "This Is Your Digital Life", developed by data scientist Aleksandr Kogan and his company Global Science Research in 2013.[2] The app consisted of a series of questions to build psychological profiles on users, and collected the personal data of the users' Facebook friends via Facebook's Open Graph platform.[2] The app harvested the data of up to 87 million Facebook profiles.[2] Cambridge Analytica used the data to analytically assist the 2016 presidential campaigns of Ted Cruz and Donald Trump.[3][4] Cambridge Analytica was also widely accused of interfering with the Brexit referendum, although the official investigation recognised that the company was not involved "beyond some initial enquiries" and that "no significant breaches" took place.[5][6]

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.