Unhidden Traits: Genomic Data Privacy Debates Heat Up

“Earlier this year Yaniv Erlich of the Whitehead Institute for Biomedical Research at M.I.T. sent bioethicists into a frenzy when he and his team uncovered the names of people whose anonymous genome profiles were published by the 1000 Genomes Project. Erlich and his co-workersfound the identities entirely by connecting Y-chromosome data and other information from the database with publicly available records, including genealogy databases and lists of people living in particular locales.”

Read more at: http://www.scientificamerican.com/article.cfm?id=unhidden-traits-genomic-data-privacy-debates-heat-up

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.

We want to hear from YOU! Tell us why you think health privacy is important.

Protecting health privacy isn’t just important for your own health and well-being, but what we do now affects future generations too. PPR cares deeply about protecting everyone’s privacy so that people are measured by who they are and what they are capable of, not their medical history.

Currently, there are no limits to the types of organizations that can gain access to sensitive information about you—employers, advertisers, insurers, you name it. It’s so important that we act now to preserve our right to privacy and regain control over our personal information. We believe it should always be up to you to decide what happens to your sensitive information—you should be able to know and control who sees it, where it goes, and why.

People say that privacy is a thing of the past in the Digital Age, but we disagree. In fact, we think people are starting to realize just how important privacy is and that it’s a right worth fighting for. That’s why we want to hear from you. Send us a video telling us why you think health privacy matters and join us in our efforts to protect it.*

Watch the video below to hear Dr. Peel talk about why health privacy is important to her (or click here to view it on YouTube).


*Please note that by sending a video, you are giving PPR permission to display the video on its website or social media pages. However, the video remains the sole property of the copyright holder. Any requests to remove or delete videos will be immediately honored.

A Family Consents to a Medical Gift, 62 Years Later

Should researchers control the use of everyone’s genomes?

It’s time for a national debate about when and how our genetic information should be used.  The healthcare industry and government are planning that our genomes will soon be part of our electronic health records, so that sensitive data can be used without patient consent. The cost of sequencing a genome will soon drop below $1,000.

But the debate about who should control the use of this unique, personal information must be informed by knowing/tracking the hidden flows of genetic data.

The next phase of theDataMap should track the use, sale, and disclosure of genetic information: from hospitals, labs, and genomic sequencing companies to private biobanks, etc, etc.

We cannot weigh risks vs. benefits of open access to genetic data when the risks are unknown.

MUST SEE privacy documentary: “Terms and Conditions May Apply” & interview with Filmmaker Cullen Hoback

Cullen Hoback, director of the documentary  “Terms and Conditions May Apply”, argues Facebook and Google are “public utilities” in an interview, “Is Facebook a Public Utility? Yes, says Filmmaker Cullen Hoback”.

The same argument applies to the US electronic healthcare system—all 300 million Americans are forced touse it, we have no real choices.

The collection and use of the nation’s health data is hidden. There is no full data map tracking all uses and we have no ‘chain of custody’ of our personal health information.

Quotes from the interview:

  • “All data can be tracked and followed.”
  • “You have the companies making a fortune off of our data and you have the government getting something that it’s wanted for a very long time, which is this sort of unprecedented access to all of the information of all of its citizens.”
  • “It’s hard to say opting out is an option.”

See the trailer for “Terms and Conditions May Apply” at  http://www.trackoff.us/

Health data breaches usually aren’t accidents anymore

While the healthcare industry has made advancements in how they protect our most personal information, those trying to steal our electronic health records have become even more savvy as to how to access them.

Key Quotes from the Article:

“One of the biggest changes during the past decade is the data being targeted. Ten years ago, it was personal identifiable information. Now, said Rick Kam, president and co-founder of ID Experts in Portland, Ore., personal health information is being targeted, mainly because of the value it holds and the relative ease thieves have getting their hands on it.”

“94% of health care organizations have had at least one breach in the previous two years.Because data can now reside in multiple locations, including unsecured smartphones, laptops and tablets, and can be transported to an infinite number of locations, thieves, whether they be outside hackers, device stealers or people who try to use staff to share sensitive information, have more areas to target.”

States Review Rules After Patients Identified via Health Records

To view the full article, please visit States Review Rules After Patients Identified via Health Records.

Key Quotes from the Article:

  • -”Some U.S. states are reviewing their policies around the collection and sale of health information to ensure that some patients can’t be identified in publicly available databases of hospital records.”
  • -Bloomberg News, working with Harvard University professor Latanya Sweeney, reported on June 4 that some patients of Washington hospitals could be identified by name and have their conditions and procedures exposed when a database sold by the state for $50 is combined with news articles and other public information.
  • -The state probes are focused on whether privacy standards for health information should be tightened as data-mining technologies get more sophisticated and U.S. President Barack Obama’s health-care overhaul drives rapid growth in the amount of patient data being generated and shared.
  • -Sweeney’s goal of identifying patients is to show that threats to privacy exist in datasets that are widely distributed and fall outside HIPAA’s regulations.

Usability Failures Heat Up EHR Replacement Market, Black Book Rankings Survey

“According to a recent Black Book Market Research user surveys, the demands of EHR usability can no longer be ignored. 100% of nearly 2,900 practices engaged in the poll report they are employing much stricter selectivity in the replacement market wave and driving more informed decisions as they prepare to swap out original EHR systems.”

To view the full release: Usability Failures Heat Up EHR Replacement Market, Black Book Rankings Survey

Hackers Sell Health Insurance Credentials, Bank Accounts, SSNs and Counterfeit Documents, for over $1,000 Per Dossier

The value of personal health information is very high inside and outside of the US healthcare system. At the same time, the US healthcare industry as a whole does a terrible job of protecting health data security. Most health data holders (hospitals and insurers) put health data security protection dead last on the list for tech upgrades.
Besides the lack of effective, comprehensive data security protections, thousands of low-level employees can snoop in millions of people’s health records in every US hospital using electronic records.

The public expects that only their doctors and staff who are part of their treatment team can access their sensitive health records, but that’s wrong. Any staff members of a hospital or employees of a health IT company who are your neighbors, relatives, or stalkers/abusers can easily snoop in your records.
In Austin, TX the two major city hospital chains each allow thousands of doctors and nurses access to millions of patient records.
All this will get much worse when every state requires our health data to be “exchanged” with thousands more strangers. The new state health information exchanges (HIEs) will make data theft, sale,  and exposure exponentially worse.
Tell every law maker you know: all HIEs should be REQUIRED by law to ask you to agree or OPT-IN before your health data can be shared or disclosed.

Today:

  • -many states do not allow you to ‘opt-out’ of HIE data sharing
  • -most states do not allow you to prevent even very sensitive health data (like psychiatric records) from being exchanged

There is no way to trust electronic health systems or HIEs unless our rights to control who can see and use our electronic health data are restored.

The Office Nurse Now Treats Diabetes, Not Headaches

In response to the escalating costs of healthcare many employers are adding on-site medical clinics to help their employees become healthier—and don’t use employees’ personal health data to penalize them or discriminate against them.

But other large employers, such as CVS, use high costs to justify replacing employees’ health insurance with health savings accounts, imposing involuntary health screenings and wellness programs, and penalizing workers who don’t respond to these simplistic solutions.

Two studies in Health Affairs show that wellness programs don’t work:

  • -“Wellness Incentives In The Workplace: Cost Savings Through Cost Shifting To Unhealthy Workers” See: http://content.healthaffairs.org/content/32/3/468.abstract
  • -“A Hospital System’s Wellness Program Linked To Health Plan Enrollment Cut Hospitalizations But Not Overall Costs”  See: http://content.healthaffairs.org/content/32/3/477.abstract
  • -Rising US healthcare costs are NOT caused by sick people who seek treatment, but by industries that decide what to charge for treatment—including the health insurance industry, the hospital industry, the drug industry, the outpatient surgical center industry, and the lobbying industry.  Industry charges have no real constraints because healthcare is not optional, sick people, employers, and/or government must pay.

Learn about why the US pays sky-high healthcare costs in Time magazine’s March 2013 issue, “Bitter Pill: Why Medical Bills Are Killing Us”

To view the full article, please visit The Office Nurse Now Treats Diabetes, Not Headaches.