PPR Submits Comments to Privacy and Security Tiger Team

On Monday, September 30, the Health IT Policy Committee’s Privacy and Security Tiger Team held a Virtual Hearing on Accounting of Disclosures, which is a listing meant to show patients all disclosures of their personal information that are made by a HIPAA-covered entity. On behalf of PPR, Dr. Peel provided written testimony that details the importance of implementing robust AODs, as well as recommendations for quick implementation using existing health IT and meaningful use requirements.

Read the full comments here.

Trust must be mutual for patient engagement to work

“A recent study in the Journal of the American Informatics Association reports that nearly one in eight patients has withheld information from their healthcare providers due to security concerns. Moreover, most of the respondents were very concerned about the security of their information when it was being shared electronically or by fax. Just last week, advocacy organization Patient Privacy Rights sent a letter to the U.S. Department of Health & Human Services urging the agency to improve privacy protections of patients’ electronic health records, particularly in the cloud and in HIEs.”

Read more: Trust must be mutual for patient engagement to work – FierceEMR http://www.fierceemr.com/story/trust-must-be-mutual-patient-engagement-work/2013-09-18#ixzz2fRtzIBsV
Subscribe at FierceEMR

Patient Privacy Rights Presses HHS for Greater Safeguards and Transparency to Protect Patient Data

Last Thursday, September 12, PPR sent a letter to U.S. Health and Human Services (HHS) Secretary Kathleen Sebelius, urging the immediate implementation of tough new patient privacy protections for digital health records.  With privacy now leading the the list of major issues troubling the public in the digital age, PPR believes meaningful and comprehensive data privacy protections are critical components when it comes to restoring patient trust.

In the letter, PPR recommends that HHS:

  • Allocate 1% of HIE (Health Information Exchange) funding to ensure all patients can choose an “HIE of One” a program that directs all personal data disclosures, which are visible to the patient without restriction or delay.
  • Mandate portals for patients and physicians and require the use of voluntary patient email addresses be used for Record Locator Services (RLS). With these technologies, every state can easily and inexpensively offer an “HIE of One” to those who want to decide who may use their data.
  • Require health IT systems to build technology so patients can segment their data for privacy, research, and any other disclosures – allowing patients to decide whether any sensitive data may be used.
  • Provide funding to build and maintain a complete health data map, a service that allows patients to see and understand data flows across the nation and throughout the world. As present, Americans have no “chain of custody” for personal health data and no way to know who is collecting and using health data.

Read the full letter here.

Read the press release here.

Five More Organizations Join Lawsuit Against NSA Surveillance

To view the full article, please visit: Five More Organizations Join Lawsuit Against NSA Surveillance

“The five entities joining the First Unitarian Church of Los Angeles v. NSA lawsuit before the U.S. District Court for the Northern District of California are: Acorn Active Media, the Charity and Security Network, the National Lawyers Guild, Patient Privacy Rights and The Shalom Center. They join an already diverse coalition of groups representing interests including gun rights, environmentalism, drug-policy reform, human rights, open-source technology, media reform and religious freedom.”

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.

What is Snowden’s Impact on Health IT?

To view the full article, please visit What is Snowden’s Impact on Health IT?

This is a highly interesting article about the effect of Edward Snowden’s actions on health IT. In the interview with PPR’s own Dr. Deborah Peel, the issues of privacy that our government is currently facing can also be applied to the healthcare industry. As Dr. Peel aptly states, “The Department of Health and Human Services claims its actions are justified to lower healthcare costs. These are obviously very different agencies collecting different kinds of very sensitive personal information, but both set up hidden, extremely intrusive surveillance systems that violate privacy rights and destroy trust in government.”

A key argument that Dr. Peel makes is “The benefits of technology can be reaped in all sectors of our economy without the harms if we restore/update our laws to assure privacy of personally identifiable information in electronic systems. Our ethics, principles, and fundamental rights should be applied to the uses of technology.”

Patient Privacy Rights hires CTO

From the article and Q&A by Diana Manos in Health Care IT News: Patient Privacy Rights hires CTO

“Patient Privacy Rights appointed Adrian Gropper, MD as its first chief technology officer. Gropper is an expert in the regulated medical device field, an experienced medical informatics executive, and he has a long record of contributing to the development of state and national health information standards, according to a PPR news release.

Gropper, who has worked with federal initiatives and the Markle Foundation to help create the Direct Project’s secure email system and Blue Button technologies says he joins PPR because the challenges of runaway costs and deep inequities in the U.S. health system call for new information tools and inspired regulation.

“PPR’s deep respect for the medical profession and our total dedication to the patient perspective form the foundation for a series of policy and practice initiatives to shape health reform and electronic health systems,” Gropper said in the news release. “As a member of the PPR team, I look forward to driving a national consensus on the most difficult issues in the information age, including respectful patient identity, trustworthy consent, research acceleration, and effective public health.”

According to PPR, Gropper is a pioneer in privacy-preserving health information technology going as far back as the Guardian Angel Project at MIT in 1994. As CTO of one of the earliest personal health records companies, MedCommons, he actively participated in most of the PHR policy and standards initiatives of the past decade.”

See the full Q&A
See PPR’s Press Release

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.”

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…”