Halamka: Time is right for patient-generated data, care traffic controllers needed Boston’s Beth Israel Deaconess Medical Center is gearing up to get data from patients’ consumer devices like Fitbit, Jawbone UP, or Withings weight scale into their EHR, according to CIO and emergency room physician Dr. John Halamka. Halamka says a number of factors make now the time for patient-generated data: devices have reached the maturity and ease of use needed to be a part of people’s care regimen; changing payment models are incentivizing the shift; and the emergence of middleware like Apple’s HealthKit will present hospitals with the piece that’s hitherto been missing in the patient generated data puzzle. “In Massachusetts, it turns out fee for service is dying fast and being replaced with alternative quality contracts,” Halamka told MobiHealthNews. Halamka offered up his own Withings Pulse O2 tracker and weight scale as an example of what’s possible now from low-cost consumer trackers. “This is exactly what has been in production for the last year or so,” Halamka said.
Home Apple bans developers from selling HealthKit data to ad platforms Late last week the Financial Times (sub. req.) reported that Apple had modified its iOS developer license agreement, its rules for developers that create apps for its devices, to ban developers from selling health data collected by HealthKit. The company wrote that developers must “not sell an end-user’s health information collected through the HealthKit API to advertising platforms, data brokers or information resellers”, according to the report. The agreement further demands that developers not use HealthKit’s API or the information collected from it “for any purpose other than providing health and/or fitness services”. In June Google announced its plans for Google Fit, a similar but more fitness-focused platform to Apple’s HealthKit, which already boasts partnerships with EHR vendors and various health systems across the country. In recent days a few reported details about Apple’s long-rumored iWatch device also emerged.
Welcome to 'uber-veillance' says Australian Privacy Foundation Regulators are way behind the game when it comes to wearable and IoT privacy, and users are willingly conspiring with companies that don't care about them to help create a society of “uber-veillance”. That's the grim conclusion reached by Australian Privacy Foundation (APF) board member and University of Wollongong researcher Katina Michael in conversation with The Register. In light of the US Federal Trade Commission's warning at CES that it's watching the Internet of Things closely, Vulture South wondered how things might stand in Australia and asked Michael for her views on the topic. One of the things that makes it hard for a regulator to formulate privacy rules covering things like RunKeeper, Fitbits and the like is that so much of the privacy invasion seems almost voluntary. “We know about peoples' measurements – sleeping, health, where they are, who they're with, engaged in sex, walking, running, speeding, burning calories”, Michael told Vulture South.
Google Genomics storing genomes in the cloud for longterm big data play Google’s genomics browser, from a video the company released last year. Between contact lenses for diabetes, big data baseline health studies, and a tiny pill that scans for cancer (not to mention curing death and setting up telemedicine visits based on search results), Google is casting a wide net in the health care field. But the company’s biggest contributions might come in an area where Google’s expertise is already established: storing and searching through large datasets. A new initiative, called Google Genomics, is courting researchers in an effort to store human genome data for them in a secure cloud for $25 per year. The MIT Technology Review recently reported that Google has, in fact, been quietly rolling out this service for months, but Google’s spat of other health projects overshadowed the news. Google isn’t the only one working on this project: Amazon is too, and a number of smaller players are lining up behind both databases.
TheGoodData wants your browsing data to benefit good causes A new scheme called TheGoodData launched on Thursday to help people protect their online privacy – or, if they’d rather allow themselves to be tracked, to allow the monetization of the resulting data for the benefit of microloan schemes in developing countries. The U.K.-based “data cooperative” has produced a Chrome plugin — based on Disconnect’s open-source technology — that acts as a blocker for the myriad advertising and analytics trackers that infest many webpages, stopping the data brokers behind those tools from following the user’s search and browsing history. If the user gives her permission, then TheGoodData itself acts as a data broker of sorts, albeit one that ensures the anonymization of the user data (including non-sensitive search queries) that it sells to ad vendors. “This is an issue of owning your personal data,” TheGoodData director Marcos Menendez said in a statement.
Now Google Wants Your Genome, Too Google is approaching hospitals and universities with a new pitch. Have genomes? Store them with us. The search giant’s first product for the DNA age is Google Genomics, a cloud computing service that it launched last March but went mostly unnoticed amid a barrage of high profile R&D announcements from Google, like one late last month about a far-fetched plan to battle cancer with nanoparticles (see “Can Google Use Nanoparticles to Search for Cancer?”). Google Genomics could prove more significant than any of these moonshots. Google began work on Google Genomics 18 months ago, meeting with scientists and building an interface, or API, that lets them move DNA data into its server farms and do experiments there using the same database technology that indexes the Web and tracks billions of Internet users. Some scientists scoff that genome data remains too complex for Google to help with. The explosion of data is happening as labs adopt new, even faster equipment for decoding DNA.
7AAICC39 The Social Life of Big Data 7AAICC39 The Social Life of Big Data Taught by Dr Mark Coté This module will provide students with the opportunity to explore an array of theories, concepts and practices in big data with a specific focus on its ‘social life’; that is, the data that we collectively generate through our myriad mediated cultural practices. Draft outline Week 1: What is Big Data? Key reading Beer, David, and Burrows, Roger. (2013) “Popular Culture, Digital Archives and the New Social Life of Data.” One essay of 4000 words (100%)
View From Nowhere Franz Kline, Suspended, 1953 On the cultural ideology of Big Data. “What science becomes in any historical era depends on what we make of it” —Sandra Harding, Whose Science? Whose Knowledge? (1991) Modernity has long been obsessed with, perhaps even defined by, its epistemic insecurity, its grasping toward big truths that ultimately disappoint as our world grows only less knowable. New knowledge and new ways of understanding simultaneously produce new forms of nonknowledge, new uncertainties and mysteries. Since every theory destabilizes as much as it solidifies in our view of the world, the collective frenzy to generate knowledge creates at the same time a mounting sense of futility, a tension looking for catharsis — a moment in which we could feel, if only for an instant, that we know something for sure. As the name suggests, Big Data is about size. Positivism’s intensity has waxed and waned over time, but it never entirely dies out, because its rewards are too seductive.
Two-thirds of Americans willing to share health data with researchers Graphic from NPR According to a new survey from Truven Health Analytics and NPR, 68 percent of American consumers are willing to share health information with researchers, but this group of people is more likely to be wealthy, well-educated, and young. Truven surveyed 3,000 Americans via landlines, mobile phones, and the web, with the group filtered by generation, education level and income level. They asked questions about physician connectedness and data privacy. The survey found that overall, only 74 percent of respondents said their physician had an electronic health record. Other questions in the survey centered on privacy and data sharing. Those in the $100,000 a year or more income bracket were more concerned about privacy than others — 27 percent of them had concerns about their health insurer and 17 percent had concerns about their physician. Nonetheless, most survey participants were willing to share information anonymously with researchers.
23andMe Is Terrifying, But Not for the Reasons the FDA Thinks SA Forum is an invited essay from experts on topical issues in science and technology. If there’s a gene for hubris, the 23andMe crew has certainly got it. Last Friday the U.S. Food and Drug Administration (FDA) ordered the genetic-testing company immediately to stop selling its flagship product, its $99 “Personal Genome Service” kit. In response, the company cooed that its “relationship with the FDA is extremely important to us” and continued hawking its wares as if nothing had happened. Although the agency is right to sound a warning about 23andMe, it’s doing so for the wrong reasons. Since late 2007, 23andMe has been known for offering cut-rate genetic testing. At first, 23andMe seemed to angle its kit as a fun way to learn a little genetics using yourself as a test subject. That phase didn’t last for long, because there is much more interesting stuff in your genome than novelty items. Sound paranoid? What the search engine is to Google, the Personal Genome Service is to 23andMe.
K/V5: Dark Data — Absence and Intervention Concept note for the fifth workshop The fifth meeting of the Knowledge / Value series will be held at the University of Exeter (UK), on 15–16 December 2014, and will explore the intersections between knowledge, value and dark data. Current discourse around data, and particularly scientific data and ‘big data’, are infused with the importance of the available, the pre-existing, the present. Within this conference, we wish to focus on the absences of data. We also hope to explore the various resonances acquired by the notion of dark data in contemporary public discourse. Aims and outline The conference, titled “Knowledge/Value and Dark Data: Absences, Interventions and Digital Worlds”, will be held at the University of Exeter on 15-16 December 2014. The meeting will comprise written papers and presentations open to all, with discussants leading on the development of the conceptual and methodological challenges for this topic of study. Participants Preliminary programme Monday 15th December
Exploratory workshop: What Is Data-Intensive Science? (December 2014) 17–19 December 2014, Jury's Inn Hotel Exeter This workshop is the first event in the project ERC project [DATA_SCIENCE], organised by Sabina Leonelli from the Exeter Centre for the Study of the Life Sciences and funded through a European Research Council Starting Grant. It brings together the key participants in the project, aiming to start long-term discussions around what constitutes data-intensive science, to compare the ways in which different scholars and fields conceptualise and enact data practices, and to agree on the set-up, methods and themes to be pursued by the project team and collaborators over the next three years. Speakers will be presenting the specific sciences that they are researching, the methods that they use and the themes that they are interested in exploring. The workshop is meant to provide an informal occasion for discussion, and will therefore not showcase full papers except for the keynote lecture provided by Professor Luciano Floridi. Invited Participants
Study finds most patients want the option to withhold data from their doctors Dr. William Tierney HIPAA is designed to give patients control of their own medical data — who can see it, who can access it, and who can use it, especially with regards to third parties. But when it comes to physicians themselves, the status quo is patients being expected to fully disclose, so doctors have all the information they might need to treat them. A new study is challenging that paradigm. The study comes out of The Regenstrief Institute, Indiana University School of Medicine and Eskenazi Health, published as a five-part special supplement to the Journal of General Internal Medicine, and it shows that patients for the most part want controls of their data. “To the best of our knowledge, a trial like ours has never been attempted before, and we believe it presents an opportunity to shape national policy based on evidence,” Regenstrief President and CEO William Tierney, MD, principal investigator of the project, said in a statement.