The Immortal Life of Henrietta Lacks, the Sequel

This is an amazing article written by Rebekah Skloot, author of ‘The Immortal Life of Henrietta Lacks’, demanding consent and trust.

Rebecca is right—-the only way Americans will trust researchers is when they are treated with respect and their rights of consent for use of genomes and genetic information is restored.

The public does not yet realize that they have no control over ALL sensitive health information in electronic systems. We have NO idea how many hundreds of data mining and research corporations are collecting and using our blood and body parts. We ALSO have no control over our sensitive health information in electronic systems violating hundreds of years of privacy rights.

This week the many stories about CVS showed employers can force employees to take blood tests, health screenings, and be forced into “wellness” programs–all of which REQUIRE collection of sensitive health information—which employees cannot control.

We have NO map of who collects and uses personal health data—Henrietta Lacks family was NEVER asked for consent to use her genome.

Contribute to build a map to track the thousands of hidden users of health data at: www.localhost:8888/pprold

Attend or watch the 3rd International summit on the Future of Health Privacy (free). Register at: www.healthprivacysummit.org

Big Data Is Opening Doors, but Maybe Too Many

To view the full article, please visit Big Data Is Opening Doors, but Maybe Too Many.

Steve Lohr likens today’s Big Data issues to the introduction of the mainframe computer in the 1960s. Even then, new technology threatened the “common notions of privacy”.

A few key quotes from the article:

“…the latest leaps in data collection are raising new concern about infringements on privacy — an issue so crucial that it could trump all others and upset the Big Data bandwagon. Dr. Pentland is a champion of the Big Data vision and believes the future will be a data-driven society. Yet the surveillance possibilities of the technology, he acknowledges, could leave George Orwell in the dust.”

“The World Economic Forum published a report late last month that offered one path — one that leans heavily on technology to protect privacy. The report grew out of a series of workshops on privacy held over the last year, sponsored by the forum and attended by government officials and privacy advocates, as well as business executives. The corporate members, more than others, shaped the final document.”

HIStalk News 3/22/13 – Quotes Dr. Deborah Peel on new CVS policy

To view the full article, please visit HIStalk News 3/22/13.

Key quote from the article:

“Patient Privacy Rights Founder Deborah Peel, MD calls a new CVS employee policy that charges employees who decline obesity checks $50 per month “incredibly coercive and invasive.” CVS covers the cost of an assessment of height, weight, body fat, blood pressure, and serum glucose and lipid levels, but also reserves the right to send the results to a health management firm even though CVS management won’t have access to the results directly. Peel says a lack of chain of custody requirements means that CVS could review the information and use it to make personnel decisions.”

Health IT Gurus predict the Next Big App

To view the full article, please visit Health IT Gurus predict the Next Big App.

“Mobile healthcare apps are multiplying fast and putting a vast array of new tools in the hands of patients and the providers who deliver their care. The pace and scope of innovation makes it hard to imagine what app developers will create next. So we put the question to some of the thinkers in the best position to know what’s needed and what’s possible.”

Here are a few key quotes from the article:

Dr. Deborah Peel, founder of Patient Privacy Rights Foundation, a privacy advocacy organization:

“People want control of their information. They want to be able to decide who sees it and make it go away. And so I think that the next big thing in healthcare is going to be that kind of control for patients over their information.”

Dr. Farzad Mostashari, head of the Office of the National Coordinator for Health Information Technology at HHS:

“We are going to be in an era where everyone is going to be looking to improve health and healthcare at lower cost. And we are going to be looking at every underutilized resource in healthcare. And the greatest, the most underutilized resource in healthcare is the patient and their family members…”

Putting Health IT on the Path to Success

“The promise of health information technology (HIT) is comprehensive electronic patient records when and where needed, leading to improved quality of care at reduced cost. However, physician experience and other available evidence suggest that this promise is largely unfulfilled.

Comprehensive records require more than having every physician and hospital use an electronic health record (EHR) system. There must also be an effective, efficient, and trustworthy mechanism for health information exchange (HIE) to aggregate each patient’s scattered records into a complete whole when needed. This mechanism must also be accurate and reliable, protect patient privacy, and ensure that medical record access is transparent and accountable to patients.”

*Subscription needed to see full article.

UPMC, Oracle to help with ID management

To view the article, please visit UPMC, Oracle to help with ID management.

UPMC revealed plans on Thursday to collaborate with Oracle in the development of cloud-based identity management technology to be utilized by small to mid-sized healthcare providers.

According to the article, “CloudConnect Health IT will enable healthcare users to easily manage computer accounts, including adding, modifying and terminating a user’s computer access, officials say. They’ll also help providers manage access based on the user’s job responsibility and provide self-service tools for retrieving forgotten passwords and unlocking accounts, as well as offer comprehensive management reporting.”

This poses a problem because, as Adrian Gropper, MD, points out “Proprietary identity systems risk being coercive of the patient to the extent that they allow aggregation of a patient’s records across multiple institutions without informed patient consent. Voluntary ID systems can be created that are not coercive while still offering the value of global uniqueness.”

Should the U.S. Adopt European-Style Data-Privacy Protections?

View the full article at Should the U.S. Adopt European-Style Data-Privacy Protections?

This urgent issue will be debated at the 3rd International Summit on the Future of Health Privacy in Washington, DC on June 5-6, 2013 at Georgetown Law Center.

The opening keynote will be Peter Hustinx, the EU Data Protection Supervisor. He will speak on “A health check on data privacy?”

Register to attend at www.healthprivacysummit.org . Later we will post a link to watch via live-streaming video.

CommonWell Is a Shame and a Missed Opportunity

This is a story about how major data holders are moving to consolidate THEIR control over the collection and use of our personal health information.

Instead of building electronic health systems that enable us to decide who can see and use our health data, we are locked out and have no way to know who is using our data or what it’s used for.

-Deborah Peel

From The Health Care Blog article: CommonWell Is a Shame and a Missed Opportunity

“The big news at HIMSS13 was the unveiling of CommonWell (Cerner, McKesson, Allscripts, athenahealth, Greenway and RelayHealth) to “get the ball rolling” on data exchange across disparate technologies. The shame is that another program with opaque governance by the largest incumbents in health IT is being passed off as progress. The missed opportunity is to answer the call for patient engagement and the frustrations of physicians with EHRs and reverse the institutional control over the physician-patient relationship. Physicians take an oath to put their patient’s interest above all others while in reality we are manipulated to participate in massive amounts of unwarranted care.

There’s a link between healthcare costs and health IT. The past months have seen frustration with this manipulation by industry hit the public media like never before. Early this year, National Coordinator for Health Information Technology Farzad Mostashari, MD, called for “moral and right” action on the part of some EHR vendors, particularly when it comes to data lock-in and pricing transparency. On February 19, a front page article in the New York Times exposed the tactics of some of the founding members of CommonWell in grabbing much of the $19 Billion of health IT incentives while consolidating the industry and locking out startups and innovators. That same week, Time magazine’s cover story is a special report on health care costs and analyzes how the US wastes $750 Billion a year and what that means to patients. To round things out, the March issue of Health Affairs, published a survey showing that “the average physician would lose $43,743 over five years” as a result of EHR adoption while the financial benefits go to the vendors and the larger institutions…”

How the Insurer Knows You Just Stocked Up on Ice Cream and Beer

View the full article at How the Insurer Knows You Just Stocked Up on Ice Cream and Beer.

Your employer already has access to personal medical information such as how often you get check ups and whether you’re taking prescription mediation through your insurance carrier, but now some companies are beginning to monitor where you shop and what you eat.

Some key quotes from the article:

“…But companies also have started scrutinizing employees’ other behavior more discreetly. Blue Cross and Blue Shield of North Carolina recently began buying spending data on more than 3 million people in its employer group plans. If someone, say, purchases plus-size clothing, the health plan could flag him for potential obesity—and then call or send mailings offering weight-loss solutions.”

“Some critics worry that the methods cross the line between protective and invasive—and could lead to job discrimination. ‘It’s a slippery-slope deal,’ says Dr. Deborah Peel, founder of Patient Privacy Rights, which advocates for medical-data confidentiality. She worries employers could conceivably make other conclusions about people who load up the cart with butter and sugar.”

“Analytics firms and health insurers say they obey medical-privacy regulations, and employers never see the staff’s personal health profiles but only an aggregate picture of their health needs and expected costs. And if the targeted approach feels too intrusive, employees can ask to be placed on the wellness program’s do-not-call list.”

Snapchat and the Erasable Future of Social Media

Here is a recent article about SnapChat, which makes pictures and videos shared via the Internet disappear 10 seconds after they are seen.
Internet technologies constantly collect and use personal data without consent. American health IT systems do the very same thing: constantly collect and use sensitive personal health data without consent. New technologies that ‘erase’ data after a single use could prevent secondary collection, disclosures, and sales of everything from our diagnoses to prescription records to DNA.
We are constantly told young Americans don’t care about privacy. Would you be surprised to learn that’s wrong? The truth is the majority of people, young and old, want to control the use of personal data:

  • -”88 percent of participants from ages 18 to 24 responded that there should be a law requiring websites and advertising companies to delete all stored information about an individual upon request”
  • -”94 percent of people from 45 to 54 also supported the idea”

“The default setting for almost everything people share online is that it will live for eternity in the cloud” —-we are forced to surrender control of personal information just to be online. Who believes the US public agreed that total surveillance is a fair price for using the Internet?

Since we can’t STOP personal data from being collected, technologies like Snapchat  and Wickr that make data “erasable” are critical tools to help restore control over personal data.

Americans want the right to be forgotten, BUT FIRST AND FOREMOST, our constitutional RIGHT TO BE LET ALONE should be restored in the digital age.

KEY QUOTES from the article about Snapchat:

  • -”In the U.S., Snapchat was the second-most popular free photo and video app for the iPhone in early February, just behind YouTube and ahead of Instagram.”
  • -Pew Research Center survey found that 57 percent of all app users “have either uninstalled an app over concerns about having to share their personal information, or declined to install an app in the first place for similar reasons.”
  • -A January 2013 study by the Ponemon Institute… found social media to be among the least trusted industries when it comes to protecting customers’ privacy online.
  • -[Snapchat's] rapid growth demonstrates a huge business opportunity—namely, services aimed at the increasing number of people worried about their social media footprints.
  • -researchers at the University of California at Berkeley found that ….young Americans ….[are] as anxious as their parents about their permanent social records.
  • -88 percent of participants from ages 18 to 24 responded that there should be a law requiring websites and advertising companies to delete all stored information about an individual upon request
  • -94 percent of people from 45 to 54 also supported the idea
  • -“The early adopters of Snapchat are teens in the U.S.”
  • -“Whenever I ask someone, do they want control over the messages and media that they send to others, the answer 100 percent is yes,” says Sell. “There’s no question that this has mainstream appeal.”
  • -Sell talks of private communication as “a universal human right” that largely doesn’t exist in the current digital landscape in which big data companies are continuously harvesting and mining information about our every online utterance.

Ephemeral data is the future