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
Subscribe at FierceEMR

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.”

The FBI’s New Wiretapping Plan Is Great News for Criminals

To view the full article, please visit: The FBI’s New Wiretapping Plan Is Great News for Criminals

US technology is designed for ‘exceptions’ and ‘outliers’, i.e., ‘worst-case’ scenarios like terrorists and unconscious patients.

Bruce Schneier concludes  his May 29th  essay:

“Finally there’s a general principle at work that’s worth explicitly stating. All tools can be used by the good guys and the bad guys. Cars have enormous societal value, even though bank robbers can use them as getaway cars. Cash is no different. Both good guys and bad guys send e-mails, use Skype, and eat at all-night restaurants. But because society consists overwhelmingly of good guys, the good uses of these dual-use technologies greatly outweigh the bad uses. Strong Internet security makes us all safer, even though it helps the bad guys as well. And it makes no sense to harm all of us in an attempt to harm a small subset of us.”

Fear-driven technology harms Democracy and health:

  • Example #1: FBI

Bruce Schneier’s essay (below) tells how US-created security flaws help the wrong people (criminals and terrorists) and harm the rest of us (law-abiding citizens).

  • Giving the government access (via back doors, brute force decryption, etc) to everyone’s data to find terrorists is the ‘worst-case’ scenario used to justify destroying strong data security protections.
  • But law-abiding people, businesses, and government really NEED strong data security protections to function everyday online.
  • Criminals and terrorists can exploit the security flaws created to catch them to steal information and harm governments, individuals, and corporations; but ordinary citizens and businesses can’t build or afford security technology to protect their own data.
  • WORST CONSEQUENCES: people will not trust technology and governments, and cyber-wars can destroy people, governments, and corporations.

 

  • Example #2: US health technology systems

The US eliminated data privacy in health technology systems, helping the wrong people (government and corporations) and harming patients.

  • Government and corporations control the use of the nation’s health data. Medical emergencies are the ‘worst-case’ scenario used to justify this technology: if you are unconscious in an emergency room (a one-in-a-million), you can’t give consent to share your data.
  • But the 299,999, 700 million US patients who are awake expect to control use of personal health data in order to trust doctors and technology.
  • Government and industry control use of the nation’s data for various purposes without the knowledge of the public, there is no ‘chain of custody’ for health data and no data map to track uses. Some hidden uses may be beneficial and some may harm patients.  Patients can’t buy or use privacy technology to protect health data.
  • WORST CONSEQUENCES: 40-50 million people/year avoid or delay treatment, or hide information to protect the privacy of health information, risking their lives and health.  Technology causes tens of millions of people who need treatment to suffer bad health outcomes.

 

In a Democracy, judges should approve spying on suspected criminals or terrorists. In a Democracy patients should be asked for consent to use personal health data. Advance directives or break-the-glass technology can permit access to health data when patients are unconscious.

 

In a Democracy, shouldn’t technology support ‘best-case’ scenarios , i.e., citizens’ freedoms and human and civil rights to privacy and health?

FTC Files Complaint Against LabMD for Failing to Protect Consumers’ Privacy

The public would be surprised how little thought or money healthcare businesses put into data security.  LabMD is probably just one of thousands of healthcare businesses that don’t encrypt patient data and whose employees who use file-sharing apps to download music, etc, exposing patient records online.

We need new laws that require businesses that hold health data to be audited to prove they protect it.

Shouldn’t businesses have to prove they use tough data security protections before they are allowed to handle sensitive health information?

To view the full article, please visit: http://www.ftc.gov/opa/2013/08/labmd.shtm

Privacy Advocates Set Their Sights on the Wrong G-Men

In the wake of NSA revelations, key privacy advocates make the point that private corporations and the government are working to ensure total surveillance of all digital information about all 300 million Americans and lock in billions in corporate revenue from the sale of personal data and detailed digital profiles of everyone in the US.

Corporate and government collection, use, and sale of the nation’s personal data is opaque.  The author of the story below trashes several  privacy advocates and misrepresents their key points about the hidden ‘government-industrial complex’.  And he claims that “Individuals can choose not to use a particular social network, search engine or website.”  But individuals have no meaningful choices online. See the documentary: “Terms and Conditions May Apply”.

The lack of trust online and in all holders of personal data is why President Obama proposed the Consumer Privacy Bill of Rights (CPBOR). Unfortunately the proposed data privacy protections in the CPBOR do not apply to the most sensitive data of all, health data.

Meanwhile,  the ‘government-industrial complex’ is destroying Americans’ most fundamental rights to privacy. The highest right of civilized man is the right to be ‘let alone’—which happens to be the foundation of Democracy.  Yet all we read about are the wonders of ‘big data’ and the need to collect and use personal data without meaningful informed consent. We can certainly use big data for innovation and benefits—but the public wants to be asked permission for all uses of data, especially for ‘research’ uses. Big data analytics is research.

  • See Westin’s research that shows only 1% of the public approves use of health data for research without consent. See more of his findings here.

Today US citizens have no control over their most sensitive personal information: health data from DNA to prescriptions records to diagnoses—-because privacy-destructive technologies and system architectures prevent us from exercising our rights to give meaningful informed consent before health data is collected, used, disclosed, or sold.

To view the full article, please visit: Privacy Advocates Set Their Sights on the Wrong G-Men

People Are Changing Their Internet Habits Now That They Know The NSA Is Watching

NSA leaks causing public to mistrust the entire  internet, not just cell phone providers. Quotes:

  • consumer concern about online privacy actually jumped from 48% to 57% between June and July
  • The %  of consumers who adjusted their browser settings and opted out of mobile tracking — jumped 12% and 7% respectively between the first quarter report and July.
  • > 60% of Internet users also reported they do not feel they have control over their personal information online, and 48% said they didn’t know how that information was being used

The lack of personal control over data online will also affect cloud service providers:

  • Cloud-computing industry experts have already estimated that because of the NSA’s surveillance of cloud providers–along with the government’s civil-liberties-trolling methods to get them to comply–more companies will move overseas.
  • ITIF has estimated that this will result in a loss of up to $35 billion for U.S. cloud providers over the next three years, while Forrester analyst James Staten puts the figure at $180 billion.

How will the public react when they find that US health data holders—-such as physicians, hospitals, labs, pharmacies, health data exchanges, insurers, mobile apps, etc, etc— use and sell sensitive personal health data?

To view the full article, please visit:

http://www.fastcoexist.com/3015860/people-are-changing-their-internet-habits-now-that-they-know-the-nsa-is-watching

Enabling the Health Care Locavore

Here’s a great article written by PPR’s Chief Technical Officer, Dr. Adrian Gropper about “why hip replacement surgery costs 5-10 times as much in the US as in Belgium even though it’s the same implant… JAMA publish[ing] research and a superb editorial on the Views of US Physicians About Controlling Health Care Costs and CMS put[ting] out a request for public comment on whether physicians’ Medicare pay should be made public.”

To view the full article, please visit Enabling the Health Care Locavore on The Health Care Blog.