Two self-described "consumer" organizations, both with humble beginnings, are competing to have their representative voted onto the one vacant spot on the board of directors of a federally funded panel that anoints healthcare information technology standards for the proposed national healthcare information network.
Balloting announcements for one of two spots allocated to consumer organizations on the 23-member board of the Health Information Technology Standards Panel went out via e-mail Tuesday. The organization was launched in 2005 pursuant to a $3.3 million HHS contract with the American National Standards Institute, New York, an accreditation body for standards development organizations. ANSI provides administrative services to the HITSP.
One consumer organization is the Patient Privacy Rights Foundation, a not-for-profit founded in 2003 by one of the two candidates, Deborah Peel, an Austin, Texas-based psychiatrist. The privacy group recently doubled the square footage of its floor space when the Wine and Food Foundation of Texas moved out of the three-room office the two organizations shared in a low-rise office building developed by Peel’s husband. Come July, when a newly hired executive director comes onboard, the foundation will more than double its payroll to one full-time employee and one part-time employee. Peel said she donates her time.
The other candidate for the HITSP board is Roni Zeiger, also a physician, whose organization famously opened its first office in 1998 in a Menlo Park, Calif., garage. Zeiger is product manager for Google, the one-time upstart search engine developer, which now has more than 12,000 employees, offices in 20 foreign countries and a market capitalization at the close of the Nasdaq exchange Thursday of nearly $150 billion.
The opening on the HITSP came up when board member Alison Rein, the assistant director for food and health policy at the National Consumers League, a Washington-based not-for-profit organization, resigned last month midway through her two-year term.
According to the biography sent to HITSP members, Zeiger is a product manager at Google working on health-related searches. He received his medical degree from Stanford University School of Medicine in Palo Alto, Calif., and completed his residency in internal medicine at the University of California at San Francisco. He has worked as an urgent-care and primary-care physician and has served as a clinical instructor at the Stanford medical school. He has a master’s degree in biomedical informatics from Stanford and was a fellow in medical informatics at the Veterans Affairs Department in Palo Alto.
According to the biography sent to HITSP members, Peel received her medical degree and her residency in psychiatry from the University of Texas Medical Branch at Galveston and completed her post-residency training in psychoanalysis at the Dallas Psychoanalytic Institute. She has been in solo practice in psychiatry and psychoanalysis since 1977.
Balloting is to close at the end of the business day on May 1, according to Tuesday's e-mail notification from Michelle Maas Deane, the HITSP secretariat with ANSI. Only consumer organizations can vote for their representative and only one vote per organization counts, Deane said in an e-mail response Thursday to a request for clarification on voting procedures. Patient Privacy Rights Foundation became a HITSP member in April 2006 and Google this month, Deanne said.
According to the HITSP charter, membership "is open to all parties with an institutional interest in or affected by the national healthcare delivery system." Members are organizations, not individuals, in one of four categories: standards development organization, or SDO; non-SDO stakeholder organization; government body; and consumer organization, defined as "consumer-representative organizations with an interest in health information technology standards."
The guidelines specify that: "Organizations that could be categorized in more than one group must choose a single affiliation for voting purposes."
Organizations are able to self-select their designation when joining HITSP, according to HITSP Chairman John Halamka, the chief information officer of Harvard Medical School and CareGroup Health System, Boston. A Google spokesman contacted by telephone Thursday with a request for comment asked that the request be sent via e-mail to Google's press office. No response to the e-mailed request had been received at deadline. Halamka explained that Google "is the portal of entry for millions of consumers each day who want to find information about disease, treatments and providers. Since they want to ensure consumers find the best possible information about healthcare, they have self-designated themselves as an organization serving consumers."
In an e-mail, Deane forwarded a list of 12 organizations, most not-for-profits, that are eligible to vote for the consumer board representative. Google is a for-profit corporation and the only IT vendor on the consumer organization list. In addition to Google and the Patient Privacy Rights Foundation, other consumer organizations are the AARP; American College of Clinical Engineering; American Federation of State, County & Municipal Employees, Consumers Union; Health Privacy Project; National Breast Cancer Coalition; National Consumers League; National Partnership for Women & Families; National Patient Advocate Foundation; and Whitcomb Consulting.
Under those rules, it would appear the organization employing the other consumer representative to the board, David Lansky, would be unable to vote for Lansky's peer. Lansky is senior director, health program, and executive director, personal health technology initiative, at the Markle Foundation, New York. Markle designated itself to be a non-SDO stakeholder, but Lansky was voted onto the board by consumer organizations, according to Deanne.
There are 238 members of the HITSP in all four categories, according to a roster dated April 23, on the HITSP Web site. Many of the members are IT companies, including Computer Sciences Corp., Cerner Corp., Dell, Epic Systems Corp., eClinicalWorks, IBM Corp. and WebMD Health Corp., which also provides a popular healthcare search engine. All of them listed themselves as non-SDOs.
In January, Google joined 10 other companies in an effort led by healthcare IT vendor Allscripts in announcing plans to provide a free, Web-based electronic prescribing service to physicians. Last May, it announced enhancements to its search service that would let users subscribe to free healthcare information from the Centers for Disease Control and Prevention, the Mayo Clinic and Kaiser Permanente. A more comprehensive healthcare specific initiative is expected from the company, according to industry observers.
Peel's Patient Privacy Rights Foundation, meanwhile, has become a ubiquitous proponent for privacy controls in the growing debate over patient rights and healthcare data usage. On Tuesday, the Coalition for Patient Privacy, of which the foundation is a member and Peel serves as chairwoman, presented to a meeting of the HHS IT advisory panel, the American Health Information Community, an 11-point list of basic privacy principles. The principles also incorporate the definition of privacy developed by the National Committee on Vital and Health Statistics and presented to HHS Secretary Mike Leavitt last year that states: "Health information privacy is an individual's right to control the acquisition, uses, or disclosures of his or her identifiable health data." The principles include using technology to allow patients the right to opt-in or opt-out of electronic systems, giving patients control over access, providing for complete audit trails and allowing patients to segment sensitive information.
In a letter to the AHIC over Peel's name, she wrote, "Technology can create far stronger privacy protections and granular control over access to records than is possible in paper systems." She called on AHIC to "facilitate the creation of an electronic health system that patients will trust by using 'smart' technology to build ironclad privacy protections into system designs up front."
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