ENTRIES TAGGED "transparency"
MIT workshop kicks off Obama campaign on privacy
Thrust into controversy by Edward Snowden’s first revelations last year, President Obama belatedly welcomed a “conversation” about privacy. As cynical as you may feel about US spying, that conversation with the federal government has now begun. In particular, the first of three public workshops took place Monday at MIT.
Given the locale, a focus on the technical aspects of privacy was appropriate for this discussion. Speakers cheered about the value of data (invoking the “big data” buzzword often), delineated the trade-offs between accumulating useful data and preserving privacy, and introduced technologies that could analyze encrypted data without revealing facts about individuals. Two more workshops will be held in other cities, one focusing on ethics and the other on law.
Voice your support for a proposed federal rule that expands patients' access to test results.
I’m convinced that there’s a wave of innovation coming in healthcare, driven by new kinds of data, new ways of extracting meaning from that data, and new business models that data can enable. That’s one of the reasons why we launched our StrataRx Conference, which focuses on the importance of data science to the future of health care.
Unfortunately, much of the data that will enable an entrepreneurial explosion is still locked up — in paper records, in proprietary data formats, and by well-intentioned but conflicting privacy regulations.
We’re making progress towards open data in healthcare, but there are still so many obstacles! Ann Waldo recently introduced me to one of these.
A 2009 law modernized patient access rights by allowing individuals to get copies of their medical records in electronic format. Unfortunately, however, these patients’ access rights surprisingly do not include lab test results – one of the types of medical records that people are most likely to find urgent and useful. Due to the interaction of HIPAA (the Federal medical privacy law), CLIA (a Federal laboratory regulatory law), and state laws, patients can only get direct access to their their test results from labs in a handful of states.
A recent New York Times story highlighted just how much pain and suffering can be caused by this inability to get access to your own lab results.
In 2011, the Department of Health and Human Services put forward a proposed Rule that would give patients the right to get their test results directly from laboratories. This Rule is still waiting to be finalized. In hopes of breaking the logjam, O’Reilly Media and a variety of other players have written a consensus letter that voices our whole-hearted support for that proposed Rule and encourages the Federal government to finalize it promptly.
We’d love to invite you to join us in signing this letter.
Patients’ rights should include direct access to their lab results, just like all their other medical records!
Emily Bell is entrusted with teaching the data journalists of the next century at Columbia University.
In this interview, the director of the Tow Center for Digital Journalism at Columbia University talks about the challenges and opportunities that face those who would practice data journalism in the 21st century. In particular, Emily Bell discusses the skills and mindset that are needed, including how a $2 million research grant will help support developing them.
Author Terence Craig on why data transparency trumps anonymization.
Ironclad digital privacy isn't realistic, argues "Privacy and Big Data" co-author Terence Craig. What we need instead are laws and commitments founded on transparency.
IBM taps the cloud to make Hadoop easier, Factual cleans geo data, Google gets transparent with gov data requests.
IBM targets businesses with a cloud-based Hadoop product, Factual tackles incomplete geo records, and Google embraces transparency by publishing and explaining the data requests it gets from governments.
In a world of full disclosure, cooking the data is the new cooking the books.
Open data and transparency aren't enough: we need True Data, not Big Data, as well as regulators and lawmakers willing to act on it.