Part one of a two-part series:
The telephone rang as Deborah Peel was driving to the airport outside Austin, Texas, a few weeks ago.
It was one of several long-distance calls she'd had that day with someone, though not a patient, who nonetheless was seeking Peel's help and support. For Peel, a physician trained in psychoanalytic psychiatry, her end of the conversation was a blend of delicate probing, empathic listening and full-bore affirmation.
When the phone call ended, Peel smiled, knowing that even though the problem was not yet fully resolved, her caller was in a better place.
"Everybody needs to be listened to," she explained. It's a phrase that isn't on Peel's business cards, but perhaps it should be.
According to Peel, 55, who is winding down her solo psychiatric practice of 30 years, today she's listening to far more patients than have ever been through her Austin office, with its Oriental rug, cloth upholstered couch and four glass-fronted bookcases stuffed with texts, including 23 light-blue volumes of the writings of Sigmund Freud.
The way Peel tells it, her patients now include every U.S. patient, whose medical privacy is being unethically and even illegally invaded by healthcares paparazzithe multibillion-dollar medical data-mining industryand the pharmaceutical and insurance companies the data-miners serve. She also believes federal officials are hell-bent on promoting healthcare IT, but arent listening to patients' concerns that their most intimate information, once digitized, could be lost, stolen or stored and held against them.
A key and nefarious event, in Peel's view, one that launched her campaign as a privacy advocate, came in 2002 when HHS administratively "gutted" the privacy rule under the Health Insurance Portability and Accountability Act of 1996. It infuriated Peel, who says her commitment to the fight to restore patients' right to privacy was born out of her many years in the practice of psychiatry.
"You spend hundreds, and even thousands of hours with a person, just listening to them," Peel says. "It's really an honor. So I understand the power of privacy because this is all about privacy. People with mental illnesses have always been discriminated against. Even in the 1970s, people would come in and pay cash on the barrelhead because they didn't want anything to go anywhere."
According to Peel, the 2002 HIPAA privacy rule change gave data-miners sanctioned access to patient informationand not for the better.
"The main use of this information is not going to be saving lives; it's going to be discriminating against people," Peel says. "We know now the main uses have nothing to do with helping people. It's corporate bottom lines."
Peel is chairwoman of the Patient Privacy Rights Foundation, a small but increasingly influential not-for-profit organization she founded in late 2003 with the help of a handful of Austin friends and colleagues.
The group recently doubled its office space when the Wine and Food Foundation of Texas, an oenophilic organization headed by Peel's husband, Larry, a commercial and residential real estate developer, moved out of the three-room office the two organizations shared.
In July, when a newly hired executive director comes onboard, the foundation will increase its payroll to one full-time employee and one part-timer. Peel donates her time.
But Peel and her group have achieved prominence far beyond what their humble operations might suggest. She has become a "go-to" source on healthcare privacy issues for reporters from a growing number of news outlets, not only for Modern Healthcare but also the New York Times, the Wall Street Journal, Newsweek, Fox News and others.
Her success in attracting media attention can be attributed to a potent blend of Texas charm, ubiquitous accessibility and relentless activity. Late last month, when a federal judge in New Hampshire sided with two data-miner plaintiffs and overturned a state law seeking to limit the use of prescription data to market drugs to physicians, Peel fired off a cranky e-mail opinion piece, a copy of which arrived at Modern Healthcare's inbox at 2:30 a.m.
"How could a judge decide that a data-mining company has a right to free speech and strike down the N.H. law to stop prescription data-mining?" she wrote. "This is an absurd finding. (The plaintiffs) have no right to eliminate prescribing doctors' or patients' privacy. Do we live in a gulag?"
Peel, who in private conversation and correspondence is most often warm, witty, self-effacing and, occasionally, profane, can be a firebrand in "official" e-mails and letters.
"I do get very, very angry," she says "What do you think keeps me up late at night reading all this stuff and writing those screeds?"
Peel was recently elected by fellow representatives of consumer-oriented organizations to the board of the federally financed Healthcare Information Technology Standards Panel, which vets and recommends to HHS data transmission standards to be used in developing a national health information network. The HITSP is scheduled to review privacy standards this year.
But Peel's most notable impact has been on Capitol Hill, where she has helped build a coalition of organizations around patient privacy rights that has lobbied Congress to throttle back on what she considers nothing less than an concerted effort by HHS under the Bush administration to promote a national healthcare IT infrastructure that supports the financial interests of privacy violators.
Historically, privacy issues have made some of the strangest bedfellows in American politics, matching liberals and libertarians in common cause. Using the Patient Privacy Rights Foundation as a springboard, Peel has worked with about two dozen other like-minded organizations across the political spectrum to form the Coalition for Patient Privacy, which includes organizations such as the iconically liberal American Civil Liberties Union and arch-conservative Free Congress Foundation.
Peel earned respect on the Hill from both sides of the divide in a fight last year over H.R. 4157, a healthcare IT bill that enjoyed broad support within the healthcare IT industry.
Introduced by then Rep. Nancy Johnson (R-Conn.), it called for a study of "barriers" to healthcare IT adoption posed by state privacy laws that are allowed by HIPAA to be more stringent than the federal privacy rule. The study provision in the bill was merely a reaffirmation by Congress of a study already commissioned by HHS under a $17 million contract with RTI International, Research Triangle Park, N.C., with assistance from the National Governors Association.
But Johnson's bill also would have authorized the HHS secretary to administratively pre-empt any state privacy laws identified by the study as getting in the way of healthcare data exchange.
In an April 2006 letter sent by the Coalition for Patient Privacy to every member of Congress, Peel wrote that Johnson's bill, "further undermines patient control by allowing (HHS) to eliminate all state healthcare privacy laws that generally are much stronger than HIPAA, the gutted federal privacy rule. Her own state, Connecticut, requires that patients give their consent before their medical records are released, while HIPAA has no such requirement."
Johnson's pre-emption language eventually was stripped from the bill by a Republican-controlled subcommittee.
Rep. Edward Markey (D-Mass.) and other liberal Democrats tried to amend the House bill to require that a patient's consent be obtained before his or her information is shared. The amendment failed on a party-line vote, which prompted Markey to give a blistering, pro-privacy floor speech before H.R. 4157 passed the House on Aug. 3. In an e-mail, Markey described Peel as "a one-woman privacy powerhouse. She combines the knowledge of a practitioner, the passion of an activist and the heart of a committed leader in the battle to protect the health privacy of all Americans."
From 2003 through 2006, Stephen Lilienthal worked on privacy and technology at the Free Congress Foundation. It joined with the Coalition for Patient Privacy in its letters to Congress, calling on members considering IT legislation to "restore the patient's right of consent."
"There was a headlong rush last year to try to implement this (IT policy) and privacy was getting short shrift, so it was useful that Deborah Peel appeared with a stop sign to get people to think more about what the consequences would be," Lilienthal said.
"There is a strain within conservatives that wants to preserve and admires tradition and doesn't really appreciate change for change sake," Lilienthal says. "When you have the traditional patient-doctor relationship threatened by commercialism, ideally, you'd hope that a lot of conservatives would respond to defend that tradition of trust. And that's why conservatives would have some appreciation of what Deborah Peel is trying to do. By virtue of Deborah's training and professional background, she lends credibility as well as that commitment.
"She's someone who came from Austin and didn't have much of an identity in Washington and just persisted and became known," Lilienthal says. "She just didn't take a trip to Washington; she took many trips and articulated the issues. She's been in meetings where there was a lot of resistance. It would have been very easy to fold her cards dealing with some of the people in the Republican leadership last year, but she didn't do that. She just (kept) going at it.
"There are people like that who can really bring an issue to front and center," Lilianthal says, saying one of them is his former boss, grass-roots conservative activist Paul Weyrich, who launched both the Heritage Foundation and the Free Congress Foundation. "She is not just a one-dimensional person. She was very different. She was very down-to-earth and human and very engaging. That is an underestimated strength."
Healthcare IT systems vendor Cerner Corp. backed the Independent Health Record Bank Act, legislation introduced last year by Sen. Sam Brownback (R-Kan.), and expects to support an updated version of the bill to be reintroduced this year, according to Amanda Adkins, director of government and industry relations for the company. The bill calls for creating patient-controlled information "bank accounts." Atkins says the company solicited Peel's input and endorsement for the concept.
"A lot of people considered her to be a roadblock on other IT bills, so that's why we wanted to engage her early on in this," Atkins says. "She is knowledgeable and passionate and articulate. People clearly listen to her."
Robert Kolodner, named in April as the permanent head of the Office of the National Coordinator for Health Information Technology at HHS, met earlier this year with Peel. A fellow psychiatrist, Kolodner says he finds Peel to be "a very sincere, dedicated individual who, based on her experience as a psychiatrist and the experience of her patients, feels passionately about this area and is doing the best she can to advance what she thinks is best in the area of privacy."
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