Part two of a two-part series (See part one here
Psychiatrist Deborah Peel has become an outspoken advocate for patient privacy rights, founding the Austin, Texas-based not-for-profit Patient Privacy Rights Foundation, and working to develop an effective coalition of organizations across the political spectrum to lobby Congress, but hers was not a direct path to advocacy.
Peel was born in 1951 in Pittsburgh to Kathryn and Abraham Charnes. A noted mathematics professor, Peel's father taught at what was then the Carnegie Institute of Technology. He would move the family as he switched academic posts to West Lafayette, Ind., and Purdue University and, by the time Deborah started kindergarten at age 4, to Evanston, Ill., where he served on the faculty of Northwestern University. Charnes moved again in 1968 to Austin to take a position with the University of Texas, where, in 1975, he was named as a finalist for the Nobel Memorial Prize in Economic Sciences.
Peel says she acquired a passion for reading early in life and what she calls "the testing gene." She left Evanston Township High School after her junior year, having tested, at age 16, into the University of Texas, then tested out of the last two years of college to enter medical school—at age 18—at the University of Texas Medical Branch at Galveston.
In 1974, the 22-year-old finished her basic medical training and began her residency in psychiatry at Galveston. In 1977, her residency completed, she entered into solo private practice. She concluded her training in psychoanalysis from the Dallas Psychoanalytic Institute in 1999. It included undergoing psychoanalysis herself for 6½ years. Peel served as chief of psychiatry at 365-bed Brackenridge Hospital in Austin from 1979 until 1990, when she was asked to help the Texas Society of Psychiatric Physicians with lobbying the Texas Legislature.
"I was nursing my 3-month-old daughter, Emma," Peel recalls. "I took her with me to hearings. I never would have sought that out, but I discovered I had a facility for plain language." (The Peels also have a younger daughter, Kathryn.)
Peel says she learned the lobbyist's tradecraft—and how to remain an optimist while facing long, legislative odds—from Kim Ross, former chief lobbyist of the Texas Medical Association, who now serves on the board of the Patient Privacy Rights Foundation.
"His deal is you can beat the insurance industry and all the money on earth if you defend patients' needs and you tell the truth," Peel says. "You take the moral high ground. I watched him do it."
After HHS amended the privacy rule in 2002, Peel and a longtime friend, Bob Pyles, a past-president of the American Psychoanalytic Association, and his brother, Jim Pyles, a lawyer with the firm of Powers Pyles Sutter & Verville, Washington, decided "there wasn't anything else we could do but file a lawsuit."
On April 10, 2003, four days before the new privacy rule went into effect, the plaintiffs, a group of patients calling themselves Citizens for Health, sued then-HHS Secretary Tommy Thompson. Their lawsuit in federal court in Philadelphia sought to overturn his administration's 2002 revisions on the grounds they violated patients' constitutional rights to privacy. More than a dozen plaintiffs, including Peel, would join in the lawsuit, which lost at the trial and appellate court levels and ultimately failed last October when the U.S. Supreme Court refused to hear the case.
Suing HHS, however unsuccessfully, "did put us on the radar screen" Peel says. It "got us attention that there really wasn't any privacy. Somewhere in there it really dawned on me that we clearly had to wake up Congress and there was no organization doing this."
In December 2003, the Patient Privacy Rights Foundation was formed. Tina Williamson, an Austin marketing and public relations professional who had heard Peel speak, volunteered to help and was promptly named the fledgling organization's first president.
"The first year (2004) we just raised money for the lawsuit," Peel says. "In 2005, we got a Web site
going, figured out how to set up offices and accounts, and had our first fundraiser. We raised $60,000."
Williamson helped craft the group's most effective lobbying and sales tool, a simple, single-page sheet of white typewriter paper with three boxes of text. The top box contains language from the 1996 HIPAA law instructing HHS to provide detailed standards on privacy. The middle box featured 2001 language from the initial HHS privacy rule, noting "a covered healthcare provider must obtain the individual's consent … prior to using or disclosing protected healthcare information to carry out treatment, payment or healthcare operations." The third box contained a key passage from the privacy rule revisions effective in 2003, noting, "The consent provisions … are replaced with a new provision … that provides regulatory permission for covered entities to use and disclose protected health information for treatment, payment, healthcare operations."
"People were dumbfounded when we showed them the three boxes," Peel said. "Members of Congress' staff didn't know that HHS, under the radar, completely reversed the intent of Congress. When it came to the House, there is no question our organization took the lead in educating about this issue."
In Peel's view, privacy became a wedge in the debate over H.R. 4157, with Democrats largely in support of some proposed privacy amendments and the Republicans divided on the privacy issue. In the end, "The Big Business wing in the Republican Party won out over the conservatives," but it was a short-lived victory. The bill lost momentum and eventually died in conference committee between the House and Senate. The sponsor of the bill, Rep. Nancy Johnson (R-Conn.), lost her seat in the November 2006 election.
Last year's lobbying success with Congress could make things even harder this year for the privacy community, Peel says.
"We're up against the best-funded lobby on earth," she says. "The data-mining and insurance industries and the technology industries want these systems that facilitate secondary use of patient data. They know we're out there now and the multimillion-dollar companies are putting pressure on the agencies. We see the president mandating things and (HHS) Secretary (Mike) Leavitt mandating things and these semi-private, quasi-governmental agencies are doing things to do away with privacy without public debate."
Not everyone is thrilled with Peel's bark off approach, including some organizations working in the interface between privacy and healthcare information exchange.
In April, when the American Health Information Management Association, a Chicago-based association for medical records professionals held its fourth annual Health Information Privacy and Security Week, Peel took issue with an AHIMA recommendation that "Consumer should establish a personal health record." Opining that even those covered under HIPAA, and many developers of PHRs are not so-called "covered entities" and are thus not bound by the HIPAA privacy rule, Peel wrote in an e-mail to Health IT Strategist
that "PHRs are being designed to facilitate the data-mining, aggregation and sale of Americans' health records."
Asked for comment about Peel for this profile through spokesman Craig May, the group responded, "The American Health Information Management Association would not want to comment on Dr. Deborah Peel."
For all that, Peel insists she's not an opponent of healthcare information technology.
"We have to figure out how to apply our fundamental rights and privileges we've always had in this country to this new technology," Peel says. "We are pro-technology, because it gives us exquisite control over who sees our information. It gives us the ability to slice and dice a record down to the data-field level, something you could never do with a paper record."
"But do people want (data-miners) to sell their prescription records?" Peel asked, rhetorically. "No."
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