Posts Tagged ‘Public Policy’

Response to: “A New Internet Privacy Law?” (New York Times – Opinion, March 18)

Wednesday, April 6th, 2011

There has been scant detailed coverage of the current discussions in Congress around an online privacy bill. The Wall Street Journal has published several pieces on it in their “What They Know” section but I’ve had a hard time finding anything that actually details the substance of the proposed legislation. There are mentions of Internet Explorer 9’s Tracking Protection Lists, and Firefox’s “Do Not Track” functionality, but little else.

Not surprisingly, we’re generally feeling like legislators are barking up the wrong tree by pushing to limit rather than expand legitimate uses of data in hard-to-enforce ways (e.g. “Do Not Track,” data deletion) without actually providing standards and guidance where government regulation could be truly useful and effective (e.g. providing a technical definition of “anonymous” for the industry and standardizing “privacy risk” accounting methods).

Last but not least, we’re dismayed that no one seems to be worried about the lack of public access to all this data.

In response, we sent the following letter to the editor to the New York Times on March 23, 2011 in response to the first appearance of the issue in their pages – an opinion piece titled “A New Internet Privacy Law,” published on March 18, 2011.

 

While it is heartening to see Washington finally paying attention to online privacy, the new regulations appear to miss the point.

What’s needed is more data, more creative re-uses of data and more public access to data.

Instead, current proposals are headed in the direction of unenforceable regulations that hope to limit data collection and use.

So, what *should* regulators care about?

1. Much valuable data analysis can and should be done without identifying individuals. However, there is as yet, no widely accepted technical definition of “anonymous.” As a result, data is bought, sold and shared with “third-parties” with wildly varying degrees of privacy protection. Regulation can help standardize anonymization techniques which would create a freer, safer market for data-sharing.

2. The data stockpiles being amassed in the private sector have enormous value to the public, yet we have little to no access to it. Lawmakers should explore ways to encourage or require companies to donate data to the public.

The future will be about making better decisions with data, and the public is losing out.

Alex Selkirk
The Common Data Project – Working towards a public trust of sensitive data
http://commondataproject.org

 

Data’s endless possibilities

Friday, January 9th, 2009

The New York Times recently published a succinct but meaty article on New York City’s new electronic health record system.  Planned and promoted by the Bloomberg administration, the system includes about 1000 primary care physicians, focused primarily on three of the poorest neighborhoods, and the data they generate about their patients.  As I read it, I found myself counting all the different functions of the system.  I found at least ten:

•    Clean up outdated filing systems;
•    Enable a doctor to compare how one patient is doing compared with his or her other patients;
•    Enable a doctor to compare how one patient is doing compared to patients all over the city;
•    Enable the city’s public health department to monitor disease frequency and outbreaks, like the flu;
•    Enable the city to promote preventative measures, like cancer screening in new ways;
•    Create new financial incentives for doctors to improve their patients’ health, on measures like controlling blood pressure or cholesterol;
•    Provide reports cards to doctors comparing their results with other doctors’;
•    Improve care by less-experienced doctors with advice and information based on a patient’s age, sex, ethnic background, and medical history, including prompts to provide routine tests and vaccinations and warnings on how drugs can potentially interact;
•    Allow doctors to follow up more closely with patients, like reminding them of appointments through new calling and text-messaging systems and being notified if their patients do not fill prescriptions; and
•    Allow patients to access their own records, make appointments electronically, and monitor their own progress on health targets (should the doctor decide to do so);

Pretty amazing, isn’t it?

Data is like that.  Once you collect it, the possibilities are endless.  Reading about this one system for health records made me realize why it’s so hard for me to describe CDP’s goals in one sentence.  We’re not trying to do something singular, like “enable a doctor to compare patients’ data.”  We’re trying to create a place where this function, and innumerable other possibilities can exist, while also being mindful that “endless possibilities” include some scary ones that we need to guard against.


Get Adobe Flash player