Re: Top 100 – Under Their Influence

This is in response to the article in Modern Healthcare By Andis Robeznieks: “Under their influence, Washington insiders hold sway over our ’100 Most Influential’ ranking, but real change seems to be coming from elsewhere.”

“The Politics of Privacy” is one of four key areas in Modern Healthcare’s story about the “100 Most Influential People in Healthcare” in 2011. Privacy was highlighted because the expectation to control personal health data is a truly bipartisan, trans-partisan issue.

The historic first-ever summit on the future of health privacy co-sponsored by Patient Privacy Rights (PPR) and the UT LBJ School in June was highlighted (see www.healthprivacysummit.org to watch videos of the sessions).

The story recognizes the crucial importance of PPR’s leadership on building patients’ rights to control use of the most sensitive personal information into the healthcare system up front, so patients will use and trust health IT systems and data exchanges.

Unfortunately, many of the new consumer privacy protections the Obama Administration supported in the stimulus bill (HITECH) are being implemented by federal agencies in ways that do not comply with HITECH and other existing federal regulations.

If industry and key government rule makers continue to ignore the American people’s expectations for control over the use of sensitive personal health data, the stimulus billions will be wasted on systems that can’t be trusted and the tremendous potential benefits health IT can bring to treatment and research may never be realized.

PPR Makes the List: 100 Most Influential People in Healthcare

Each year Modern Healthcare Magazine encourages the public to nominate and vote for the top “100 Most Influential People in Healthcare.” This year we are happy to announce that Dr. Peel is back on the list at #52. You can see the full list here.

She and Patient Privacy Rights are also highlighted in this article in Modern Healthcare: “Under their influence, Washington insiders hold sway over our ’100 Most Influential’ ranking, but real change seems to be coming from elsewhere.” Subscription is required to read the entire story, however one of four sections on the list of 100 addresses privacy, and highlights Patient Privacy Rights and Dr. Deborah Peel as leaders in this area.

Dr. Peel first appeared on the list in 2007 as #4 of the “100 Most Powerful People in Healthcare” for her work to make sure patients control access to their electronic medical records, and continued to be the only privacy advocate on the list in 2008 and 2009. She was nominated but did not make the final list in 2010. Her recognition this year shows that people are aware of privacy being a major issue in health care and that they are starting to realize we still do not have control over who sees our health records.

Don’t bet on knowing your records’ whereabouts

Joseph Conn with ModernHealthcare.com wrote about the Health Privacy Summit in the IT Everything blog. You can read the full article here: Don’t bet on knowing your records’ whereabouts

“Do you know where your electronic health information is tonight?

Here’s a reader challenge: I’ll pay $10 to the first adult who has had at least five encounters with the private-sector healthcare system in the past 10 years to come up with a complete map of where all his or her electronic health records have traveled, who has seen them and where they are now.

I feel my money is safe in my pocket, and here’s why:

First, I’ve been covering health IT for nearly 11 years, and there is no system I know in this country that can completely track the whereabouts of someone’s electronic health information.

Second, there are no laws or incentives to induce complete tracking of a patient’s records.

And yet, patients ought to have access to just such a record map, according to health IT and privacy experts participating in the first Health Privacy Summit Monday in Washington. The daylong conference was put together by Patient Privacy Rights and the Lyndon B. Johnson School of Public Affairs at the University of Texas, Austin…”

PPR Founder Nominated again for 100 Most Influential

For the 5th year in a row, PPR founder and chair, Deborah C. Peel, MD, has been nominated to be on Modern Healthcare’s list of the 100 Most Influential People in Healthcare.  More than 414,000 nominations were received from April 4 through May 6, and the ballot of 300 candidates is based on those nominations.

Dr. Peel debuted on this prestigious list in 2007 as the 4th most powerful person in healthcare. They changed the list from the “most powerful” to “the most influential,” which suits our situation even better. Patient Privacy Rights is not the “Most Powerful” in the healthcare industry, however we are extremely influential. Over the past few years we have had a huge impact on health care, health IT, and your health privacy. We not only got new ground breaking privacy protections into the stimulus bill, but are still working today to follow up with those regulations and ensure they are implemented properly. Dr. Peel has traveled world wide to discuss the health care situation here in the United States, and how important privacy is. In the last year she has testified before the Health IT Policy Committee as well as the President’s Council of Advisors on Science and Technology.

We are working every day to influence lawmakers, health IT vendors and industry, insurers, doctors, patients, and more to hold privacy as a priority. Help us make it clear to those deciding your future, that in order to move ahead we must put privacy at the front of the line! Vote for Deborah Peel.

You can view a full list of the 300 candidates with their titles and affiliations here.

Please take a moment and vote for Deborah Peel to keep privacy a priority.

Re: They’ve got an app for that

In response to Modern Healthcare’s article: They’ve got an app for that

On Feb 15th and 16th , the President’s Council on Science and Technology (PCAST) report was discussed in DC by the national HIT Policy PCAST Worgroup. A key PCAST recommendation was that data be meta-tagged for many uses—one key use is so patients can add tags that say: “do not disclose this sensitive data unless I say so”. Patient Privacy Rights and the Coalition for Patient Privacy have LONG argued that all health IT systems and data exchanges MUST restore patient control over the most sensitive personal information that exists: electronic health data.

We are glad to see privacy-enhancing technologies being demonstrated and used in the nation’s largest electronic health system: the military health system covering 9 million lives.

This story shows how the VA is actually ALREADY using data meta-tags so patients can control who sees what health data—see the video that goes along with the story below at: http://www.modernhealthcare.com/article/20110224/VIDEO/302249949/-1

Holes in the fence?

This story, by Joseph Conn with Modern Healthcare, quotes Patient Privacy Rights, Dr. Blumenthal the National Coordinator for Health IT, and many others, all calling for meaningful consent and privacy.

See these great quotes from Alan Westin:

  • the removal of consent from HIPAA by federal rulemakers in 2002 “left us high and dry,” but with the improvements to HIPAA in the stimulus law, “I think the raw materials for excellence are there.”
  • Privacy protection will depend again on HHS rulemakers, however, he says. (A proposed privacy rule addressing HIPAA modifications from the stimulus law was released by HHS in July, but a final rule is pending.) If it’s not addressed, Westin says, don’t be surprised if there is consumer backlash.
  • “I think we’re at a pivotal moment,” Westin says, given the massive inflows of federal IT subsidies about to begin. “Just imagine a lawsuit as a class action with all the people who would otherwise be swept into a network saying, ‘I did not give my consent,’ and asking the court to intervene.”
  • he sees “a dangerous trend” developing in healthcare IT in which patients are regarded as “inert data elements, not conscious persons” who have the right to make informed choices regarding “how their health information is used beyond the direct care settings.”
  • “You have to have privacy orienting systems at the design,” he says. “If the plumbing all gets in, it’s going to be very costly to tear it down and change it.”

Below are a few sections of the article. To see the full article, follow this link to Modern Healthcare.

Is the primary federal privacy law up to the task of protecting patient information in the 21st century?

It’s a question we put to opinion leaders in the legal, research, policy, ethics, provider and technology fields within the healthcare privacy community. It comes as hospitals and office-based physicians ramp up adoption of electronic health-record systems and join information exchanges to qualify for their share of the $27 billion in federal information technology subsidy payments available under the American Recovery and Reinvestment Act of 2009, also known as the stimulus law…

…A new challenge will be to regulate against the abuse of data outside the scope of HIPAA. “You encounter personal health records, where people put their health information on a cell phone, or on Google and Microsoft, and Google and Microsoft are not covered entities. We need to figure out what the privacy framework is for personal health records and other sharing of personal information.”

Deborah Peel is the practicing psychiatrist who founded the Patient Privacy Rights Foundation in Austin, Texas. To Peel, the HIPAA paradigm is obsolete and inadequate and needs to be replaced.

“You can’t draw a fence around who has sensitive health information,” Peel says. “It might have made sense 20 years ago, but it is a model that doesn’t fit the realities of today. It’s based on an anachronistic view of the healthcare system, as if it’s totally separate from everything else in business and in life, and if technology has taught us anything, it’s that that’s not effective.”

Peel also says the 42 CFR Part 2 framework should be applied to all patient data. “Healthcare information, because of the Internet, is everywhere; therefore, the protections must follow the data,” she says. “If we don’t say a damn word about social media and websites and the rest, we lose because that information is out there in all of those places.”

Nominate PPR & Keep Privacy Powerful

Each year Modern Healthcare Magazine encourages the public to nominate and vote for the top 100 “Most Powerful People in Healthcare.” Help keep PRIVACY at the top of the list by nominating Patient Privacy Rights’ founder, Dr. Deborah Peel.

Dr. Peel first appeared on the list in 2007 as #4 of the most powerful people in health care for her work to keep medical records private. The last two years she remained on the list as one of the only consumer advocates. Keep privacy at the forefront by nominating Dr. Peel again this year.

Nominating is easy and fast. Simply go to http://vovici.com/wsb.dll/s/4509g43fc4, and use the information below:

  1. Last name: Peel
  2. First name: Deborah
  3. Title: Founder & Chair
  4. Name of Organization: Patient Privacy Rights
  5. Location of Organization: Austin, TX

Click ‘submit’ and you are done.

Please NOMINATE NOW; the deadline is May 7th. Help us keep privacy front and center in health care.

Thank you, and keep an eye out for when it’s time to vote!