‘Consumer’ groups vie for HITSP board opening

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.

{A product manager for Google is running for election to 1 of only 2 consumer seats on the 23-member board of the Health Information Technology Standards Panel (HITSP). HITSP is charged with developing privacy standards for electronic systems by HHS. Since when is such a large corporation a “consumer organization”?  Google has customers and shareholders; it certainly does not represent consumers and patients. HITSP has many slots for industry “stakeholders”, why doesn’t Google run for one of those? The discovery that Google can designate itself as a “consumer organization” and seek a seat on HITSP makes clear how industry-driven and dominated the process for building the national electronic health system really is. HITSP’s operations ensure that our legal and ethical rights to control access to our medical records privacy rights will receive little attention. The foxes are in charge of this chicken coop. ~ Dr. Deborah Peel, Patient Privacy Rights}

Rein resigns from HITSP board of directors

Alison Rein, one of only two consumer representatives on the Healthcare Information Technology Standards Panel board of directors, a federally supported advisory group tasked with improving health information exchange by harmonizing data standards, has resigned–more than two months ago–although an e-mail making public her resignation and including a call for her replacement wasn’t sent until late in the day Wednesday.

Rein, the assistant director for food and health policy at the National Consumers League, a Washington-based not-for-profit corporation, was midway through a two-year term on the 23-member board.

The resignation, though not in protest, comes with Rein adding her voice to those of several others recently who criticized federal efforts to promote healthcare information technology without first firmly establishing a foundation of a national healthcare privacy policy.

In a telephone interview, Rein said the federal government is only now “grudgingly” paying attention to privacy issues. On Feb. 1, a General Accountability Office report accused HHS of foot-dragging in developing an IT privacy policy and a few weeks later, Paul Feldman, deputy director of the Health Privacy Project at Georgetown University, resigned his co-chairmanship of an HHS privacy work group, saying much the same thing.

HITSP was created in 2005 by the American National Standards Institute, pursuant to a $3.3 million HHS contract. ANSI, a Washington-based not-for-profit organization, accredits standards development organizations and coordinates the development and use of standards in the U.S.

{HITSP has been absorbed with detailed technical use cases that do not provide consumers with control over access to their electronic health records. HITSP has not promoted consumer involvement. As Rein said, “If they truly want to have consumer engagement in this process, someone has to say it’s really meaningful to have consumers involved and support that. So far, the government hasn’t supported anyone doing this and neither have any foundations. It’s not an uncommon problem, but it is a reality that we all have been struggling with.” ~ Dr. Deborah Peel, Patient Privacy Rights}

HITSP work group provides panel with update

A federally funded committee seeking to harmonize healthcare information technology standards received an update from its new security and privacy work group Monday. In so doing, the Healthcare Information Technology Standards Panel took stock of the chicken-or-egg situation now faced by the government in its efforts to promote IT: Which comes first, the privacy protection policy or the privacy protection IT standards?
Johnathan Coleman of Security Risk Solutions, a contractor for the HITSP security and privacy work group, gave the update near the close of a daylong meeting of the panel in Washington. The American National Standards Institute, an accreditation body for standards development organizations, created HITSP in 2005 under a $3.3 million HHS contract.
The goal of the new work group, which first met Jan. 4, is to advise HITSP on ways to harmonize data transmission with “relevant security and privacy standards, including the HIPAA (Health Insurance Portability and Accountability Act) security and privacy rules and basic consents, where appropriate,” according to an overview document presented during the meeting.
Among the 69 work group members listed on the ANSI Web site are representatives from McKesson Corp., a pharmaceutical wholesaler and IT systems vendor; Cerner Corp. and IBM among several IT systems and services vendors; RxHub, an IT services provider for the two largest pharmacy benefits managers; the Albertsons drug-store chain; WellPoint, the insurance giant; the Liberty Alliance, a consortium of global telecommunications, financial services, Internet and IT companies; a handful of government organizations such as the Social Security Administration and the Centers for Disease Control and Prevention; and two provider organizations, the Veterans Affairs Department and Kaiser Permanente.
{The industry dominated Healthcare Information Technology Standards Panel (HITSP) continues to press forward setting up standards for electronic health data transfers that violate stronger state laws, Constitutional law, common law, the physician-patient privilege, and ethical principles that require patient consent before any data is shared. Instead, the HITSP workgroup on Security and Privacy should make setting standards that do not violate privacy rights its highest priority. ~ Dr. Deborah Peel, Patient Privacy Rights}