Prescription drug database bill stalls in Pa. House

To view the full article, please visit: Prescription drug database bill stalls in Pa. House

“A bill that would create a prescription drug database intended to help law enforcement nab doctor-shoppers and pill mills hit a hurdle Wednesday in the state House.”

Facebook Eases Privacy Rules for Teenagers

Vindu Goel ties all the critical factors together in Facebook’s ongoing decisions that eliminate teens’ privacy on Facebook: the history of social media and children, teen psychology and bullying, the EU’s response, and how exposing teens online is driven by Zuckerberg’s quest for ever greater profits.

To view the full article, please visit: Facebook Eases Privacy Rules for Teenagers

Five Public Interest Groups Underscore Opposition To Settlement In Google Privacy Suit

“Consumer Watchdog joined the Electronic Privacy Information Center (EPIC) and three other public interest groups today in re-iterating their opposition to a proposed $8.5 million settlement in a class action suit against Google for privacy violations in the way it handled users’ search data because proposed recipients of settlement funds don’t represent the interests of the class.”

Read more: http://www.digitaljournal.com/pr/1529279#ixzz2i1kPTbJt

Everyone expects information they share to be used only once, for one purpose.

This expectation is not a surprise. This ethical principle is called  ‘single use’ of data.

Humans expect to set and regulate personal boundaries in relationships with others.  We only trust people and institutions that don’t share sensitive personal information without asking us first.

People don’t trust governments or corporations that violate their expectations and rights to privacy, ie, rights to control the use of personal data.

When the US public realizes their rights to health information privacy are violated by hidden government  and corporate use and sale of their most intimate, sensitive information: health data, from prescriptions to diagnoses to DNA—the fallout will be far more devastating than the NSA revelations.

After all, Americans expect some level of government surveillance to protect us from terrorism, but the hidden collection and sale of health data by industry and government is very different: it completely shatters trust in the patient-physician relationship. The lack of trust in electronic health systems already causes 40-50 million people to delay or avoid treatment for serious illnesses, or to hide health information. Current technology causes bad health outcomes.

The Internet and US health technology systems are currently designed to violate human and civil rights to privacy.  The Internet and technology must be rebuilt to restore trust and restore our rights to control personal information.

Deb

Google to Sell Users’ Endorsements

The New York Times posted an article reminding us about the permanence of our digital footprints.  Those old posts are never forgotten and can now be used by Google to make a profit.

“Those long-forgotten posts on social networks, from the pasta someone photographed to the rant about her dentist, are forgotten no more. Social networks want to make them easier to find, and in some cases, to show them in ads.  Google on Friday announced that it would soon be able to show users’ names, photos, ratings and comments in ads across the Web, endorsing marketers’ products. Facebook already runs similar endorsement ads.”

“’People expect when they give information, it’s for a single use, the obvious one,’ said Dr. Deborah C. Peel, a psychoanalyst and founder of Patient Privacy Rights, an advocacy group. ‘That’s why the widening of something you place online makes people unhappy. It feels to them like a breach, a boundary violation.’”

“’We set our own boundaries,’” she added. ‘We don’t want them set by the government or Google or Facebook.’”

“Dr. Peel said the rise of new services like Snapchat, which features person-to-person messages that disappear after they are opened, showed how much people wanted more control over how their information was shared.”

To view the full article click here

Why The Experts Are Probably Wrong About The Healthcare.gov Crack-Up

“Many technology experts are blaming the software behind Healthcare.gov for all the problems Americans have encountered while trying to sign up for health insurance in accordance with the Affordable Care Act.”

This interesting article explores what is wrong and what is right about healthcare.gov. To view the full article, please visit Why The Experts Are Probably Wrong About The Healthcare.gov Crack-Up.

Security and Privacy of Patient Data Subject of Regulatory Hearing

Representatives of patients, providers, insurers and tech companies testify before federal panel yesterday at the HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures.

“We believe it’s the patient’s right to have digital access that is real-time and online for accounting of disclosures,” said Dr. Deborah Peel, the head of Patient Privacy Rights, a group she founded in 2004. Patients “need and want the data for our own health. We need to have independent agents as advisors, independent decision-making tools, we need independence from the institutions and data holders that currently control our information. We need to have agents that represent us, not the interests of corporations,” she said.

“I think the day will come when people will understand that their health information is the most valuable personal information about them in the digital world and that it’s an asset that should be protected in the same way that they protect and control their financial information online,” Peel said.

To view the full article click Security and Privacy of Patient Data Subject of Regulatory Hearing

To view a PDF of the hearing click HIT Policy Privacy & Security Tiger Team Virtual Hearing on Accounting for Disclosures

 

Patient privacy evangelist, analytics officer spar over data rights

To view the full article, please visit: Patient privacy evangelist, analytics officer spar over data rights

“…At the HIMSS Media/Healthcare IT News Privacy and Security Forum in Boston, patient privacy advocate Deborah Peel, MD, of Patient Privacy Rights, and UPMC Insurance Services Division Chief AnalyticsOfficer Pamela Peele took the stage to debate the highly-contested issue of whether patients should have full consent over how and with whom their personal health information records are shared.”

Key quotes from Dr. Peel:

“Forty to 50 million people a year do one of three things: avoid or delay diagnosis for critical conditions like cancer, depression and sexually transmitted diseases, or they hide information,” said Peel. “There’s the economic impact of having a system that people don’t trust.”

“He found that only a whopping 1 percent of the public would ever agree to unfettered research use of their data. Even with de-identified data, only 19 percent would agree to the use of their data for research without consent,” said Peel. “On the other hand, when people are asked if they want to participate or have their data used with consent, the public is very altruistic, so we get something very different fuller information, more complete information when the public knows what you’re doing with it and they support the project.”

 

Trust must be mutual for patient engagement to work

“A recent study in the Journal of the American Informatics Association reports that nearly one in eight patients has withheld information from their healthcare providers due to security concerns. Moreover, most of the respondents were very concerned about the security of their information when it was being shared electronically or by fax. Just last week, advocacy organization Patient Privacy Rights sent a letter to the U.S. Department of Health & Human Services urging the agency to improve privacy protections of patients’ electronic health records, particularly in the cloud and in HIEs.”

Read more: Trust must be mutual for patient engagement to work – FierceEMR http://www.fierceemr.com/story/trust-must-be-mutual-patient-engagement-work/2013-09-18#ixzz2fRtzIBsV
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Five More Organizations Join Lawsuit Against NSA Surveillance

National Lawyers Guild, Patient Privacy Rights and The Shalom Center Among 22 Groups Asserting Right to Free Association

 

San Francisco, Ca – infoZine – Five new groups—including civil-rights lawyers, medical-privacy advocates and Jewish social-justice activists—have joined a lawsuit filed by the Electronic Frontier Foundation (EFF) against the National Security Agency (NSA) over the unconstitutional collection of bulk telephone call records. With today’s amended complaint, EFF now represents 22 entities in alleging that government surveillance under Section 215 of the Patriot Act violates Americans’ First Amendment right to freedom of association.

 

The five entities joining the First Unitarian Church of Los Angeles v. NSA lawsuit before the U.S. District Court for the Northern District of California are: Acorn Active Media, the Charity and Security Network, the National Lawyers Guild, Patient Privacy Rights and The Shalom Center. They join an already diverse coalition of groups representing interests including gun rights, environmentalism, drug-policy reform, human rights, open-source technology, media reform and religious freedom.