Benefits of Online Medical Records Outweigh the Risks- Includes Opposing Quotes from Dr. Deborah Peel

An article written by Larry Magid in the Huffington Post quotes PPR when speaking about the issues surrounding electronic health records. You can view the full article here: Benefits of Online Medical Records Outweigh the Risks.

“There are also privacy concerns. In a 2010 Wall Street Journal op-ed, psychiatrist Deborah Peel, founder of Patient Privacy Rights, complained that ‘lab test results are disclosed to insurance companies before we even know the results.’ She added that data is being released to ‘insurers, drug companies, employers and others willing to pay for the information to use in making decisions about you, your job or your treatments, or for research.’ Her group is calling for tighter controls and recognition that “that patients own their health data.’”

When the Privacy Button is Already Pressed

See the full article in the New York Times at: When the Privacy Button is Already Pressed

There is no “DO NOT TRACK” button in HIPAA. What happens when the public finds out they have no button to control the use and sale of intimate information about their minds and bodies?

This story shows the public is waking up to privacy:

*        11% of Mozilla users have turned ‘Do Not Track’ on.

*        18% of those with Firefox on Android phone use ‘Do Not Track’.
From sexual preferences, to records of child abuse, to DNA, to prescription records—–HIPAA and electronic systems eliminate our control over personal health information. Others decide when to use, disclose, or sell it. There is no “chain of custody” for personal health data. We can’t find out who collects and uses our health data. We can’t read a ‘data map’ and see where our health data flows. There is no health data map. See ABC World News story about the sale of health data: http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986&singlePage=true#.UFKTXVHUF-Y

The first step to fix any problem is to KNOW about it. Then we have to demand that law makers fix this disaster. Health information should not be used to make hidden decisions about our jobs, reputations, or credit.

Health technology can provide enormous benefits—but systems have to be re-designed so we control who sees and uses our health records. The best way to prevent harm is keep health data out of the hands of hidden users. Anyone who wants to use our health records should have to ask.

Your Medical Records May Not Be Private: ABC News Investigation

ABC TV’s Jim Avila shows how easy it is to buy personal health data. He spoke with security consultant Greg Porter, who showed him how to buy personal health information online for $14-$25. ABC News learned about the lack of effective security and privacy for medical records from “Julie” at the 2nd International Summit on the Future of Health Privacy.

Here is the video (after a short advertisement):

You can also see the above ABC News video on medical records at: http://abcnews.go.com/Health/medical-records-private-abc-news-investigation/story?id=17228986#.UIQCz1H6Acs

ABC’s print story about the TV news segment tells “Julie’s”  story, quotes Patient Privacy Rights (PPR), and links to our free online consumer protection forms so you can take action to better protect your health data. Use the free consent form and ask physicians and hospitals to honor longstanding state laws that require consent before they disclose your health information. According to HIPAA, providers can refuse to honor requests like this, but HIPAA also says stronger state laws and medical ethics should prevail—so ‘ask’ and tell them to honor your rights to control who sees and uses your electronic health information.

Privacy and Data Management on Mobile Devices

See this link for the entire survey of 1,954 cell phone users (see excerpt below): http://pewinternet.org/~/media//Files/Reports/2012/PIP_MobilePrivacyManagement.pdf

When the public learns about hidden data use and collection on cell phones,  significant numbers of people TURN them OFF:

  • -“57% 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”

What will the public do when they realize they CANNOT turn off:

  • -hundreds of software ‘applications’ at hospitals that collect, use, and sell their health information
  • -thousands of EHRs and other health information technologies that collect, use, and sell their health information
  • -health-related websites that collect, use, and sell their health information

Consumers Say No to Mobile Apps That Grab Too Much Data

To view the full article, please visit the New York TimesConsumers Say No to Mobile Apps That Grab Too Much Data

Imagine the reactions smart phone users will have when they discover the vast, hidden industry that collects, uses, and sells personal health data—-from prescription records to DNA to diagnoses.

A recent Pew Research Center study found smartphone users are taking action to protect their privacy:

·50% “decided not to install applications on their mobile phones because they demanded too much personal information”

·Nearly a third uninstalled an application after learning that it was collecting personal information “they didn’t wish to share.”

·And one in five turned off location tracking “because they were concerned that other individuals or companies could access that information.”

What will happen when smartphone users want to protect the privacy of their health information and try to turn off:

·the hundreds or thousands of hidden disclosures and uses of their sensitive health records by hospitals’ and doctors’ health IT systems

·the daily sale of their prescription records by pharmacies and lab test results by clinical laboratories

·the disclosure of personal health information via state “health information exchanges” and the Nationwide Health Information Network

If Americans can figure out and ACT to prevent cell phone apps from grabbing their contacts and location information—what will they do when they find out that electronic health systems collect use, and sell mountains of detailed, intimate information about their minds and bodies—and they can’t turn these “apps” off?

People CAN choose to live without Angry Birds (or whatever app they decide against) but they really CAN’T choose to go without healthcare – at least not without possibly serious health repercussions.  People can choose what personal info to share online (to some degree), but really can’t choose what health info is shared.

Health technology systems that eliminate patient control over who can see and use sensitive health data are causing the nation’s greatest hidden privacy disaster. It can only be fixed when the public finds out.

Survey uncovers lax attitudes toward BYOD security

To view the full article by Eric Wicklund in mHIMSS, please visit Survey uncovers lax attitudes toward BYOD security.

Ask your doctor about his/her smart phone or iPad: does he/she use it for work, is your data encrypted, can the data on the device be wiped if its lost or stolen?

The number of people who work in healthcare using personal devices like smart phones and Apple products is exploding—but many mobile devices lack the strong data security protections required for health data-like encryption. So if the device is lost or stolen, so is the sensitive information about your mind and body.

Key quotes from the story:

* 51% say their companies don’t have the capability of remotely wiping data from a device if it is stolen or lost

* Less than half had (data security) controls in place for mobile devices

* 84%  of individuals stated they use the same smartphone for personal and work issues.

* 47% reported they have no passcode on their mobile phone.

Senator Al Franken is pressing Congress and the Department of Health and Human Services (HHS) to specifically require health data to be protected on portable media. The government is pouring billions into build an electronic healthcare system but failing to require or enforce effective rules to protect our sensitive health information, from prescription records to DNA to diagnoses. Electronic health records are far easier to steal, sell, or lose than paper records because hundreds or thousands of people who work at hospitals and health plans can access our health data.

It’s crazy that health data is not protected by ironclad security protections at all times, no matter where its being used. You’d think even without government regulations for data protection that anyone handling our most sensitive personal information would protect it, but many don’t.

Shoppers, Meet Your Scorekeeper

See the article in the NY Times at: Secret E-Scores Chart Consumers’ Buying Power

Let’s call this business what it really is: data theft, not scorekeeping. This great story by Natasha Singer is in the vein of the WSJ series: “What They Know”. There is no way to know if our e-scores, derived from 50,000+ pieces of personal information, are used only for shopping.

  • There is no proof that eBureau does what the CEO says. Unless eBureau reveals all the buyers of the scores or lets us see all the personal data they collect/steal about us there is no way to know if the scores are used to discriminate against us in key life opportunities.

Natasha Singer writes clearly about the business model of hidden data theft and hidden data mining that is used by so many Internet-based corporations.  She profiles Gordy Meyer, CEO of eBureau, who claims his company makes entirely legal use of millions of online and other personal, electronic clues.  He imagines we freely, consciously give personal data away to corporations like his to create instant, extremely detailed, deeply intimate real-life profiles of every one of us (which he sells at 3 to 75 cents/per profile).

When we simply LOOK or CLICK AROUND a website, we are not in any meaningful way giving consent to hidden data-thieving corporations to collect or use personal information. We are victims of unfair and deceptive trade practices and data theft.

The public simply has no concept that extremely detailed digital profiles are being collected used to discriminate against them:

  • Ebureau then adds several thousand details–like age, occupation, property value, length of residence, and retail history–from its data bases to each customer profile. From those raw data points, the system extrapolates up to 50,000 additional variables per person.”

What are the “several thousand details” eBureau adds?  Could they be details like your searches for information on treatment of melanoma? or STDS?  How do we know what the details are?  eBureau will not tell us.

The story closes with a quote from Frank Pasquale:

  • “I’m troubled by the idea that some people will essentially be seeing ads for subprime loans, vocational schools and payday loans,” Professor Pasquale says, “while others might be seeing ads for regular banks and colleges, and not know why.”

One of the worst parts of this story is that eBureau’s CEO makes assertions that cannot be verified:

  • there is no way to know what data is collected or what eBureau does with it
  • there is no way to know if eBureau “meets regulatory requirements” or “has put firewalls in place to separate data bases containing federally regulated data, , like credit or debt information used for purposes like risk management, from databases about consumers used to generate scores for marketing purposes.” because there is no outside auditing.

My bet is that a HUGE part of what is collected is information about our minds and bodies. We already know that personal health information is the most valuable digital information about each of us. Will purchasers of eBureau’s scores offer a credit card to anyone with cancer or Depression? Will we be able to qualify for loans to send our kids to college if we have genetic risks for breast cancer or heart disease?

Only 26 Percent of Americans Want Electronic Medical Records, Says Xerox Survey

Xerox kindly shared all three years of their annual Electronic Health Records (EHR) online surveys by Harris Interactive. The media, industry and government unrelentingly promote health technology as the latest, greatest best stuff.  But the public ain’t buying it.  They want smart phones, but they don’t  want EHRs.

Clearly the public is not very excited about EHRs; 74% don’t want them. They don’t want them because they understand the problems with EHRs so well.

To view the article, please visit Only 26 Percent of Americans Want Electronic Medical Records, Says Xerox survey

Not only do the surveys show a low percentage of Americans want electronic health records—but it’s remained low; this year at only 26%. Overall 85% of the public has “concerns” about EHRs this year. The surveys also asked about specific ‘concerns’. They found the public is concerned that health data security is poor, data can be lost or corrupted, records can be misused, and that outages or ‘computer problems’ can take records offline and compromise care.  See results below:

To the question do you want your medical records to be digital:

  • 26% said ‘yes’ in 2010
  • 28% said ‘yes’ in 2011
  • 26% said ‘yes’ in 2012

To the question do you have concerns about digital records:

  • 82% said ‘yes’ in 2010
  • 83% said ‘yes’ in 2011
  • 85% said ‘yes’ in 2012

To the question could your information be hacked:

  • 64%  said ‘yes’ in 2010
  • 65%  said ‘yes’ in 2011
  • 63%  said ‘yes’ in 2012

To the question could your digital medical records  be lost or corrupted:

  • 55% said ‘yes’ in 2010
  • 54% said ‘yes’ in 2011
  • 50% said ‘yes’ in 2012

To the question could your personal information be misused:

  • 57% said ‘yes’ in 2010
  • 52% said ‘yes’ in 2011
  • 51% said ‘yes’ in 2012

To the question could a power outage or computer problem prevent doctors from accessing my information:

  • 52% said ‘yes’ in 2010
  • 52% said ‘yes’ in 2011
  • 50% said ‘yes’ in 2012

Information Technology’s Failure to Disrupt Healthcare

Nicolas Terry wrote a very interesting and informative paper about the effects IT has had on healthcare today. It is available for download in its full text version here: http://papers.ssrn.com/sol3/papers.cfm?abstract_id=2118653. Below is his abstract.

Abstract: Information Technology (IT) surrounds us every day. IT products and services from smart phones and search engines to online banking and stock trading have been transformative. However, IT has made only modest and less than disruptive inroads into healthcare. This article explores the economic and technological relationships between healthcare and healthcare information technologies (HIT), asks (leveraging the work of Clayton Christensen) whether current conceptions of HIT are disruptive or merely sustaining, and canvasses various explanations for HIT’s failure to disrupt healthcare. The conclusion is that contemporary HIT is only a sustaining rather than disruptive technology. Notwithstanding that we live in a world of disruption, healthcare is more akin to the stubborn television domain, where similarly complex relationships and market concentrations have impeded the forces of disruption. There are three potential exceptions to this pessimistic conclusion. First, because advanced HIT is not a good fit for episodic healthcare delivery, we may be experiencing a holding pattern while healthcare rights itself with the introduction of process-centric care models. Second, the 2010 PCAST report was correct, the healthcare data model is broken. If Stage 3 of the MU subsidy program or some other initiative can funda

Patient Safety and Health Information Technology: Learning from Our Mistakes

MUST READ article by Ross Koppel about why and how government and industry denial of serious design flaws in electronic health systems endanger patients’ lives and safety. He uses detailed examples, citations, and the historical record to support his case. Flawed technology causes serious patient safety issues in the same way flawed technology prevents patient control over who can see, use, or sell sensitive health information.

Yet technology could vastly improve patient safety and put patients back in control over the use of their health data. Why is poor technology design entrenched and systemic? Koppel states, “The essential question is: why has the promise of health IT—now 40 years old—not been achieved despite the hundreds of billions of dollars the US government and providers have spent on it?”

He makes the case that key problems arise from industry domination over the public interest. “Marketing overdrive” has caused:
· Denial and magical thinking: we see the “systematic refusal to acknowledge health IT’s problems, and, most important, to learn from them”

· Prevention of “meaningful regulations since 1997″: ”This belief that health IT, by itself, improves care and reduces costs has not only diminished government responsibility to set data format standards, it has also caused us to set aside concerns of usability, interoperability, patient safety, and data integrity (keeping data accountable and reliable).”

· Destructive “lock-in” to flawed technology systems: A full software package from a top firm for a large hospital costs over $180 million, and can cost five times that figure for implementation, training, configuration, cross-covering of staff, and so on.(11,12) Because illness, accidents, and pregnancies cannot be scheduled around health IT training and implementation needs, the hospital must continue to operate while its core information systems are developed and installed. This investment of time and money means the hospital is committed for a decade or more. It also reduces incentives for health IT vendors to be responsive to the needs of current customers.(13,14)

We have been to this rodeo before. Koppel points out these same phenomena occur over and over in many other industries:
“we had dozens of railroad gauges, hundreds of time zones, and even areas with both left- and right-hand driving rules. In all cases, the federal government established standards, and the people, the economy, and especially the resistant industries flourished. Industry claims that such standards would restrict innovation were turned on their heads.”

The health technology industry has failed to reform itself for 40 years. Effective federal laws and regulation are the only path to ensuring innovation and interoperability, to make health IT systems safe for patients and useful to doctors, and to restore individual control over who sees the most sensitive personal information on Earth.

See the full article at Web M&M: Patient Safety and Health Information Technology: Learning from Our Mistakes