GOP senators seek to ‘reboot’ federal health IT policy, unveil white paper

This article is by subscription only: GOP senators seek to ‘reboot’ federal health IT policy, unveil white paper

“Key GOP senators released a white paper Tuesday (April 16) raising concerns with federal policy on health information technology, and the lawmakers seek feedback from stakeholders — including the administration, hospitals and vendors – on how the program can be improved. The senators worry that the $35 billion allocated to health IT in the 2009 stimulus package is being spent inefficiently and suggest Congress, the administration and stakeholders work together to “reboot” the electronic health record incentive program so that it to accomplish its goals.”

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Employees’ unhealthy habits have growing effect on their insurance premiums

The story below concludes that “Employees now contribute 42 percent more for health care than they did five years ago.”   Just because employees are stuck paying higher healthcare bills doesn’t necessarily mean they are causing costs to increase.

If employees were driving up healthcare costs, then using financial penalties to force them to undergo intrusive health screenings and join wellness programs might make sense.

But employees aren’t causing the high costs of healthcare in the US.  Time magazine concluded that healthcare corporations, such as hospitals and the pharmaceutical industry, outpatient procedures, and lobbying costs are the main culprits.

Time magazine’s issue titled “Bitter Pill, why medical bills are killing us” identified several factors in high US healthcare costs:

The article below quotes the National Business Group on Health (NBGH), a lobbying group with assests of $18,772,047 in 2011. The NBGH blames employees for rising healthcare costs, instead of its many healthcare corporation members.

  • -URL for NBGH members: https://www.businessgrouphealth.org/join/members.cfm
  • -Blaming employees allows the NBGH to defend using coercive, intrusive wellness programs even for employees with complex, hard-to-manage illnesses, that wellness programs don’t help:
    • -See “Wellness Incentives In The Workplace: Cost Savings Through Cost Shifting To Unhealthy Workers” By Jill R. Horwitz, Brenna D. Kelly, and John E. DiNardo. Health Affairs, 32, no.3 (2013):468-476; doi: 10.1377/hlthaff.2012.0683; http://content.healthaffairs.org/content/32/3/468.full.html

Meanwhile screening companies, labs, and wellness programs collect sensitive employee health information and control its use, disclosure, and sale.

  • -There is no ‘chain of custody’ for health data so employees have no way to know who sees their health information.
  • -The US has NO data map to track the thousands of hidden companies that collect, use, or sell Americans’ personal health information.
  • -Corporations that collect employees’ health information treat it as a corporate asset, not as sensitive personal information that patients have strong rights to control.
  • -So it’s impossible to verify whether the NBGH lobbyist’s statement that “few employers would risk intentionally misusing such information” is true or false.

Blaming people who are sick for the high costs of their medical care instead of the corporations that overcharge is a really neat trick. It also provides a rationale for coercing employees to enter wellness programs and violating their rights to health privacy.

Unfortunately, simply “blaming the victims” won’t solve escalating healthcare costs.  We have to look broadly at individuals, the entire healthcare system, the food-chain, and larger cultural factors to identify and deal with all the real causes.

Privacy Framework: A Practical Tool?

An interesting article about our Privacy Framework- to view the full article please visit Privacy Framework: A Practical Tool?

Some key quotes:

“The PPR Trust Framework is … designed to help organizations ensure that technology and IT systems align with the privacy requirements of critical importance to patients and reflect their legal and ethical rights to health information privacy,” Peel says.

“The framework was developed by a group within Patient Privacy Rights – the bipartisan Coalition for Patient Privacy – along with Microsoft and the consulting firm PricewaterhouseCoopers, Peel says. It was developed, tested and validated on Microsoft’s HealthVault personal health record platform.”

“Ensuring the privacy of patient data is a key concern for any healthcare IT vendor,” says Sean Nolan, distinguished engineer, Microsoft HealthVault. “Microsoft as a company advocates for a more standardized federal approach to the privacy of data, and this is especially true for the HealthVault team. We believe that it takes a deep corporate commitment to the privacy of patient data in order to support initiatives such as the PPR Trust Framework.”

Groups develop privacy framework for health IT

To view the full article, please visit Groups develop privacy framework for health IT.

An article written at ModernHealthcare.com about our new Privacy Trust Framework explains how the framework came into being and what it’s major principles are.

Key quote from the article:

“‘This comes from what the American public wants and was devised by Microsoft and PricewaterhouseCoopers,’ Peel said. ‘Some of the bigger corporations see the future as the public controlling things. Microsoft wanted to distinguish itself from Google Health (its one-time rival as a developer of PHR platforms) and wanted HealthVault to be the privacy place and wanted to compete in that way.’ PricewaterhouseCoopers saw a future auditing opportunity, she said. ‘We’re now moving with the Blue Button where patients can access their information and control it. The ultimate consumer is the patient.’”

The Privacy Trust Framework can be found here.

Framework Outlines Key Principles for Protecting Privacy of Patient Data

To view the full article, please visit Framework Outlines Key Principles for Protecting Privacy of Patient Data.

iHealthBeat released an article about the Privacy Rights framework explaining its goals and principles.

Key quote from the article:

“The framework aims to help health care organizations measure how well their IT systems and research projects meet certain best practices for protecting patient privacy.

Patient Privacy Rights eventually intends to develop a system to license organizations based on their privacy policies and practices.”

The full Privacy Trust Framework can be viewed here.

New Framework Details 15 Core Health Privacy Principles

To view the full article, please visit New Framework Details 15 Core Health Privacy Principles.

HealthDataManagement.com recently posted this article about Patient Privacy Rights’ Privacy Trust Framework. The article tells HealthDataManagement readers “The Framework is designed to help measure and test whether health information systems and research projects comply with best privacy practices in such areas as whether patients have control over their protected health information, an organization obtains meaningful consent before disclosing data and obtains new consent before secondary data use occurs, patients have the ability to selectively share data, and the organization uses servers housed in the United States, among other factors.”

The key principles for our Privacy Trust Framework:

*Patients can easily find, review and understand the privacy policy.

* The privacy policy fully discloses how personal health information will and will not be used by the organization. Patients’ information is never shared or sold without patients’ explicit permission.

* Patients decide if they want to participate.

* Patients are clearly warned before any outside organization that does not fully comply with the privacy policy can access their information.

* Patients decide and actively indicate if they want to be profiled, tracked or targeted.

* Patients decide how and if their sensitive information is shared.

* Patients are able to change any information that they input themselves.

* Patients decide who can access their information.

* Patients with disabilities are able to manage their information while maintaining privacy.

* Patients can easily find out who has accessed or used their information.

* Patients are notified promptly if their information is lost, stolen or improperly accessed.

* Patients can easily report concerns and get answers.

* Patients can expect the organization to punish any employee or contractor that misuses patient information.

* Patients can expect their data to be secure.

* Patients can expect to receive a copy of all disclosures of their information.

The full framework can be viewed at Privacy Rights Framework.

The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?

To view the full article by Andrea Peterson in ThinkProgress, please visit: The Ethics of Publishing Genomes: Can Today’s Family Members Give Consent for the Next Generation?

In the early 1950′s, doctors at Johns Hopkins took the cells from Henrietta Lacks’ tumor and, without her consent, have used them for years for research. Earlier in March, the entire genome of Henrietta Lacks was published with neither the knowledge nor consent of her surviving family. This privacy breach has “started a new chapter in that tale about the complex relationship between researchers and the privacy of genetic information.”

Some key quotes from Dr. William Pewen, Assistant Professor of Public Health and Family Medicine at Marshall University, and a former top health care adviser to the now retired Sen. Olympia Snowe (R-ME):

  • -“The release of Henrietta Lack’s genome illustrates the fact that genetic information isn’t an individual matter — it impacts family members as well. This underscores the need to ensure the rights of individuals and preserve the confidentiality of research data. Once patient privacy is lost, problems are simply compounded. Just how can today’s family members give consent for the next generation?”
  • -“[i]n an age of technology advances and ‘Big Data’ analytics, it’s clear that medical data can be used in countless detrimental ways. That will simply be fostered if we allow ethics and human rights to be undermined by expediency.”

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

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.”

CVS requiring employees to undergo weight, health assessment

To view the full article, please visit CVS requiring employees to undergo weight, health assessment.

Key quotes from the article:

“This is an incredibly coercive and invasive thing to ask employees to do,” Patient Privacy Rights founder Deborah Peel told the Boston Herald, noting that such policies are becoming more prevalent as health costs increase.

“Rising health care costs are killing the economy, and businesses are terrified,” she continued to the Herald. “Now, we’re all in this terrible situation where employers are desperate to get rid of workers who have costly health conditions, like obesity and diabetes.”

“While patient-privacy activists have cried foul, Michael DeAngelis, a CVS spokesman, explained that the goal is health.”

To learn more about the issue, please visit our Health Privacy Summit Website and register for the 3rd International Summit on the Future of Health Privacy.