EHIP

Privacy experts face off over patient control, policy safeguards

Deborah Peel, founder and chair of the Patients Privacy Rights group, and Deven McGraw, director of health privacy at the Center for Democracy and Technology, presented their views before the Health IT Policy Committee on the role of patient choice and control in protecting personal health information.

Consumers will trust health information systems only if they can be assured that their data is confidential, Peel said.

“Privacy and consumer control over personal health information is the easiest, cheapest and most efficient enabler of health information exchange,” she said.

Peel believes patients should actively consent to every request to share their data, and that technology – even cell phones – could help them do that.

In contrast, McGraw said that while it is natural to want to control over one’s own information, in practice the reliance on patient consent resulted in weaker privacy.

“It relieves the holder of the data from establishing privacy protections,” she said.

Instead there needs to be a comprehensive set of rules or approaches that all organizations involved with the exchange of health data must follow, McGraw said.

Automated summary from: Government Health IT

Utilities' smart meters save money, but erode privacy

Those new smart meters Peco Energy Co. and other utilities will install soon are being touted as money-savers that will give customers more control over their electric bills.

Already, Peco is analyzing daily readings to spot thieves who intermittently bypass the meters and steal power. And experts looking at meter data can discern the telltale signs of illicit activity, such as a marijuana "grow house."

But the new generation of smart meters that Pennsylvania utilities are required to install will produce far more data, generating readings at least hourly. The meters could record material so frequently that power flows could be interpreted like DNA to reveal unique electrical signatures of individual appliances.

Some experts imagine an Orwellian future in a carbon-constrained world, where consumers are cited for excessive electricity use, or divorce lawyers comb through meter records and ask: Who used the hot tub while the spouse was away?

Because they capture so much information, the meters also can reveal intimate details about activity inside a customer's house: when they are home; when they sleep; when they eat.

Automated summary from: The Philadelphia Inquirer

A Casualty of the Technology Revolution: 'Locational Privacy'

A little-appreciated downside of the technology revolution is that, mainly without thinking about it, we have given up “locational privacy.” Even in low-tech days, our movements were not entirely private. The desk attendant at my gym might have recalled seeing me, or my colleagues might have remembered when I arrived. Now the information is collected automatically and often stored indefinitely.

“It is the fact that people's locations are being recorded "pervasively, silently, and cheaply that we're worried about," the Electronic Frontier Foundation said in a recent report.

People's cellphones and E-ZPasses are increasingly being used against them in court. If your phone is on, even if you are not on a call, you may be able to be found (and perhaps picked up) at any hour of the day or night. As disturbing as it is to have your private data breached, it is worse to think that your physical location might fall into the hands of people who mean you harm.

This decline in locational privacy, from near-absolute to very little in just a few years, has not generated much outrage, or even discussion.

There are many ways, as the Electronic Frontier Foundation notes, to use cryptography and anonymization to protect locational privacy. To tell you about nearby coffee shops, a cellphone application needs to know where you are. It does not need to know who you are.

It’s time for a serious conversation about how much of our privacy of movement we want to give up.

 Automated summary from: New York Times

Research Trove: Patients’ Online Data

After Amy Farber learned she had the rare and fatal disease called LAM in 2005, she became determined to increase and speed up research into her illness with the hope of finding a cure in her lifetime.

To her dismay, she says, she encountered a cumbersome research system fraught with obstacles to collaboration and progress — one that failed to focus on patient needs.

That led her to Frank Moss, director of the Massachusetts Institute of Technology Media Laboratory, and a new collaboration between her group and the Media Lab: LAMsight, a Web site that allows patients to report information about their health, then turns those reports into databases that can be mined for observations about the disease.

Patients' everyday experiences in living with an illness are an enormous source of untapped data, he said; aggregated, those data could generate new hypotheses and avenues for research.

But private companies like 23andMe and PatientsLikeMe are not bound by the same patient protection rules that govern traditional medical researchers who receive federal financing. Company leaders say they have detailed patient privacy statements and ethics policies.

Ben Heywood, co-founder and president of PatientsLikeMe, said his company’s business model was built on trust.

“We are only successful if our patients are engaged and using the site,” Mr. Heywood said. “If we break their trust, we lose our community and we have nothing.”

As these companies evolve, however, Dr. Cooke-Deegan said he expected them to have to deal with more issues of privacy and informed consent, since maintaining patient trust is crucial to their success.

Automated summary from: New York Times

Health records: Privacy concerns and eHealth

Last September, the McGuinty government launched eHealth Ontario, an agency charged with creating an electronic system to record provincial health data by 2015.

Charlie Dawes, a Montreal-based IT consultant, says the project should be viewed from the standpoint that "no data are secure" and a "guarantee of privacy remains impossible."

Dawes lists three areas of concern for "security holes."

“The first and simplest method of access to private information is by the health care professionals, their staff and government employees themselves.

"The second potential breach of privacy stems from unscrupulous individuals who use illegal technologies to steal the passwords of health care providers and thus obtain anonymous access to the health database.

"The third method through which our health record security may be breached is by far the most dangerous and worrisome: the core network and database supporting the entire eHealth system being hacked into and the health data of Ontarians stolen."

Automated summary from: The Winsor Star