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

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

Poll shows: We trust our doctors, not their systems

This computer world article by Lucas Mearian discusses a new survey from CDW, showing patients trust their doctors but not electronic health records. And Many respondents don’t even trust themselves with their own records!

See the full article: U.S. patients trust docs, but not e-health records, survey shows

Sadly, patients should not trust their doctors unless they know their doctors’ electronic health records systems do not sell their personal health information.

The public has no idea that many electronic health systems sell their data. Even doctors may not realize the EHR systems in their offices or in hospitals sell patient data. Many claim to sell “de-identified” data, but it is very easy to re-identify health data.

This practice of selling health data was banned in the stimulus bill but has not been implemented in federal regulations, so it continues unabated.

Worse, the proposed regulations are directed ONLY at the use of health data for marketing, NOT at the health data mining industry that sells real-time, sensitive, detailed patient data profiles to corporations, government, and anyone who can pay for it.

The point of the ban on sale of health data without consent was to end the daily sale of every American’s prescription records from all 54,000 pharmacies, to end the sale of health data from electronic health systems and data exchanges, and to end the sale of health data by all the other organizations that are part of the healthcare system food chain like: insurers, state governments, labs, data warehouses, data management companies, the data analytics industry, business associates, secondary and tertiary data users, etc., etc.

See a brief TV investigative story about one EHR vendor that gives the software to doctors for “free” because its business is selling the patient data: http://www.ktvu.com/news/24278317/detail.html

New Patient Privacy Poll

Should anyone other than you control your personal health information in electronic health systems? Across the board, Americans resoundingly say “NO.”

Patient Privacy Rights worked with Zogby International to conduct an online survey of over 2000 adults to identify their views on privacy, access to health information, and health information technology (health IT). The results were overwhelmingly in favor of individual choice and control over personal health information.

View the Privacy Poll Results
View the Press Release
Listen to the Press Teleconference here

News Coverage
Healthcare IT News: Poll: Huge majorities want control over health info
Forbes: Americans Want to Control Their Health Information
Fierce Health IT: Majority of Americans want personal control of health information
Modern Healthcare: Privacy desires ignored

Americans are not just concerned about corporations snooping in their medicine cabinets, but also about researchers, nosy employees, and people with malicious intent, such as an ex-spouse or abusive partner.

Over ninety percent of Americans want to be able to decide which individual people can see and use their health information. This reflects a strong desire for very specific, detailed control.

Note: A sampling of Zogby International’s online panel, which is representative of the adult population of the US, was invited to participate. Slight weights were added to region, party, age, race, religion, gender,
education to more accurately reflect the population. The margin of error is +/- 2.2 percentage points.

Privacy desires ignored

For psychiatrist Deborah Peel, maybe patient privacy and patient consent aren’t identical twins, but they’re sure close relatives.

Not surprisingly, a recent Zogby International poll commissioned by Peel’s not-for-profit Patient Privacy Rights Foundation, Austin, Texas, focuses on patient consent and its relationship to privacy—a unity the federal government has chosen to either ignore or deny.

The 2,000 adult poll respondents reached by Zogby via the Internet put great store in their right to privacy. They cling to the quaint notion that they should be asked before their electronic health records are sent skittering off to unknown users for unknown purposes. See full poll results here.

Silly them.

HHS rulemakers wrote away a key right to privacy eight years ago.

An HHS revision to the Health Insurance Portability and Accountability Act privacy rule in 2002 stripped away one of the broader authorities giving patients the right to control the flow of their medical information. HHS rulemakers did it by eliminating the right of consent. They took a stringent privacy protection rule and transformed it into a disclosure rule.

There are a lot of bright folks who have warned HHS that this privacy issue broadly—and this HIPAA privacy rule revision, specifically—are going to explode on the healthcare industry. One of the more insistent voices has been Peel’s, but she by no means alone.

Majority of Americans want personal control of health information

It’s hard to get Americans to agree on much these days, but overwhelming majorities seem to want control over their own electronic health information.

A poll from Dr. Deborah Peel’s Patient Privacy Rights Foundation and Zogby International found that 97 percent of the more than 2,000 U.S. adults surveyed believe that hospitals, physicians, laboratories and IT vendors should not be allowed to sell or share “sensitive health information” without consent. Ninety-eight percent are opposed to health insurance companies marketing personal health information, according to the survey.

See full poll results here.

Americans Want to Control Their Health Information

Health privacy watchdog Patient Privacy Rights and Zogby International surveyed 2,000 people, and found that almost all object to doctors, hospitals, and insurance companies sharing or selling their information without their consent. An overwhelming majority also wants to decide not only which companies and government agencies can access their electronic health records, but which individuals.

See the Survey Results

Hospitals and doctors are currently busy implementing the first stage of requirements under the HITECH Act, which calls for providing patients within the next two years with an electronic copy of their physical, test results, and medications. Ultimately, patients should be able to access their electronic health record online.

Poll: Huge majorities want control over health info

AUSTIN, TX – Patient Privacy Rights, the health privacy watchdog, has enlisted the help of Zogby International to conduct an online survey of more than 2,000 adults to identify their views on privacy, access to health information, and healthcare IT. The results were overwhelmingly in favor of individual choice and control over personal health information.

View the full poll results here.

Ninety-seven percent of Americans believe that doctors, hospitals, labs and health technology systems should not be allowed to share or sell their sensitive health information without consent.

The poll also found strong opposition to insurance companies gaining access to electronic health records without permission. Ninety-eight percent of respondents opposed payers sharing or selling health information without consent.

“No matter how you look at it, Americans want to control their own private health information,” said Deborah Peel, MD, founder of Patient Privacy Rights. “We asked the question, ‘If you have health records in electronic systems, do YOU want to decide which companies and government agencies can see and use your sensitive data?’ Ninety-three percent said ‘Yes!’”…

…The group advocates a ‘one-stop shop’ website where consumers can set up consent directives or rules to guide the use and disclosure of all or part of their electronic health information; if a request to use or sell health data is not covered by privacy rules, they can be ‘pinged’ via cell phone or e-mailed for informed consent.

Patient Privacy Rights calls this solution the “Do Not Disclose” list – similar to the national “Do Not Call” list. If a patient’s name is on the list, any organization that holds his or her sensitive health information, from prescriptions to DNA, must first explain how that information will be used before being granted permission.

Annual health information exchange survey shows positive ROI

A growing number of providers and health plans surveyed by the eHealth Initiative report a positive return on their healthcare exchange investments, according to eHi’s fifth annual survey, released Thursday.

For the first time in an eHi survey, a majority (69 percent) of respondents reported a positive financial return on their investment for participating stakeholders, including health plans, hospitals, laboratories and physician practices.

In 2007, 31 percent reported a positive ROI.

The electronic exchange of health information between physicians, hospitals, health plans and patients is decreasing the cost of care and improving outcomes, the survey found. The reported savings came through elimination of redundant tests, fewer hospital stays for medication errors, decreased costs of caring for chronically ill patients and reduced staff time spent on administration, those surveyed reported.

Public wants PHRs, but with privacy caveats: survey

Privacy concerns could present a significant psychological barrier to individuals signing up for personal health records while a sizable majority of the public wants a panoply of privacy protections wrapped around PHRs, according to a new public-opinion survey.

“The results documented firm attitudes in a majority of adults surveyed regarding privacy practices in the unfolding world on online PHR services,” according to a seven-page report of the survey findings. The survey discussion was part of a news conference on PHRs hosted by the Markle Foundation and its Connecting for Health program to promote the use of interoperable healthcare information technology.