A Fraying of the Public/Private Surveillance Partnership

To view the full article, please visit: A Fraying of the Public/Private Surveillance Partnership

The lack of data security and privacy on the ‘HealthCare.gov’ triggered national outrage.For the first time patient privacy is a national issue.

Healthcare.gov’s serious technology flaws sparked huge privacy fears even though ONLY one piece of health data is collected, “Do you smoke?”.

The public now fears that the US government and the health IT industry don’t protect sensitive personal health data. Rightly so. See:

 

But current US health IT systems also enable hidden armies of corporations and government agencies to use sensitive personal health data without patient consent.

If our health data was actually private, how could it be sold on the Internet? Three short videos:

 

We have no map of all the hidden flows of our health data. See examples mapping the hidden flows of US health data:

o   states sell health data: http://thedatamap.org/states.html

o   top buyers of health data: http://thedatamap.org/buyers.html

o   data breaches reveal who purchased health data: http://thedatamap.org/history.html

o   health data is easy to re-identify: http://thedatamap.org/risks.html

The consequences of the lack of patient privacy (control over personal health data) are millions people act to keep health data private:

  • Today 40-50 million people/year act to try to keep health data private:

o   37.5 million people every year hide information to try to keep it private

§  November, 2005. National Consumer Health Privacy Survey, California Healthcare Foundation:http://www.chcf.org/publications/2005/11/national-consumer-health-privacy-survey-2005

o   Over 5 million every year avoid or delay early diagnosis for cancer, mental illness, or sexually-transmitted diseases

§  65 Fed. Reg. at 82,779, 65 Fed. Reg. at 82,777, 65 Fed. Reg. at 82,778

§  Or see page 7: http://patientprivacyrights.org/wp-content/uploads/2010/08/The-Case-for-Informed-Consent.pdf

Technology can ensure all the benefits and prevent harms. The idea that we must surrender privacy forever to ‘wire’ the healthcare system is false.

Technology should “do no harm” to patients. The cure is to use tough privacy-enhancing technologies.

Healthcare.gov sends user information to third parties, violating its own privacy policy

You might be interested in this story “Healthcare.gov sends user information to third parties, violating its own privacy policy.” 

The site sends user information to third parties like Pingdom and DoubleClick that are hidden data collectors.  Here you can find a screenshot in which Ghostery is used to show 7 hidden trackers: Healthcare.gov trackers

 

Google’s $8.5M Privacy Pact Going To Inapt Orgs, Groups Say

“A coalition of privacy groups [including Patient Privacy Rights] stepped up its opposition to the proposed $8.5 million settlement of a California class action alleging Google Inc. illegally divulged search information, saying Wednesday that counsel has failed to show how the seven organizations chosen to receive cy pres funds are appropriate.”

To view the full article (only available by subscription), please visit Google’s $8.5M Privacy Pact Going To Inapt Orgs, Groups Say.

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.”

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.

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.”

 

HHS Site Aims To Educate About Health Information Exchange

“On Tuesday, HHS launched a website to help health care providers educate their patients on making informed decisions about health information exchange, The Hill‘s “Healthwatch” reports.”

“Deborah Peel — founder and chair of the not-for-profit Patient Privacy Rights — called HHS’ educational efforts flawed.”

She suggested that HHS instead should have:

  • Mentioned patients’ “fundamental right to health information privacy” in model notices for HIPAA compliance released this week; and
  • Informed patients of their right to a complete list of entities who have accessed their personal health information in electronic health records (FierceHealthIT, 9/17).”

For more information, please visit: HHS Site Aims To Educate About Health Information Exchange

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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Pairing patient privacy with health big data analytics

“Health privacy and security are often mentioned in tandem, but Deborah Peel, Founder and Chair of Patient Privacy Rights and Adrian Gropper, Chief Technology Officer of Patient Privacy Rights, took a different view in a recent Institute for Health Technology Transformation (iHT2) webcast.”

“The presentation, titled “Competing for Patient Trust and Data Privacy in the Age of Big Data” detailed a few of the nuances between patient data privacy and security and why privacy is so significant as healthcare organizations pull together huge data sets for health information exchange (HIE) and accountable care.”

To view the full article, please visit: Pairing patient privacy with health big data analytics

The webcast can be viewed at: Competing for Patient Trust and Data Privacy in the Age of Big Data Webinar

Five More Organizations Join Lawsuit Against NSA Surveillance

To view the full article, please visit: Five More Organizations Join Lawsuit Against NSA Surveillance

“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.”