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 resignedmore than two months agoalthough 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.
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.
Under the current government IT promotion scheme, staffers at the Office of the National Coordinator for Health Information Technology develop what are called "use cases," specific areas of data exchange, which are then approved by the American Health Information Community, an advisory panel set up by HHS Secretary Mike Leavitt in 2005. The use cases are then sent to various AHIC work groups for their members' deliberations and recommendations on how the use cases might best be implemented. HITSP seeks out and vets the technical standards its members deem most appropriate to carry out the implementation recommendations of AHIC and its work groups.
An e-mail from the HITSP Secretariat Michelle Maas-Deane announcing Rein's resignation was received by Modern Healthcare at 6:56 p.m. Wednesday. It said: "In accordance with clause 5.2 of the current HITSP Charter (HITSP 06 N 48), there are two representatives of consumer organizations. One of these seats is now vacant due to the resignation of Alison Rein of the National Consumers League. In this regard, we would welcome any self-nominations or nominations of a consumer member for the Board (of course, subject to the approval of the nominee to have his/her name submitted) to be received no later than close of business on Friday, April 13."
The HITSP board has met in February and March since Rein's resignation. David Lansky, senior director of the health program and executive director of the Personal Health Technology Institute at the Markle Foundation is the other consumer representative on the HITSP board. Lansky could not be reached for comment.
"I resigned in mid-January," Rein said in a telephone interview Thursday. "I'm sort of surprised the HITSP folks haven't made the announcement until now."
HITSP Chairman John Halamka, the physician chief information officer at CareGroup Health System and Harvard Medical School, Boston, said in a pair of e-mails that Rein has "been a great help to HITSP and me personally." But he added, "There is nothing to read into the delay refilling her position, just a side effect of many work streams going on at once.
"The past few weeks we've been very busy setting up our work plans for the new AHIC use cases," Halamka wrote. "We'll replace her soon with another consumer representative."
With Rein's departure, HITSP loses a knowledgeable advocate for patient privacy. In a Jan. 15 Commentary for Modern Healthcare that Rein co-authored with Steven Findlay, a healthcare analyst with Consumers Union, the pair cited several barriers to progress in promoting healthcare IT. First of these was "a lack of any national policy on healthcare privacy." They also noted "a fear of reopening the Health Insurance Portability and Accountability Act" even though "it is now widely acknowledged that HIPAA's privacy provisions do not adequately protect the confidentiality of medical records in a fully digitized electronic-health world."
Rein and Findlay also said in the Commentary that the Bush administration deserves credit for leadership on health IT, but it has "shied away from difficult policy challenges" and the authors criticized HHS and the Office of the National Coordinator for Health Information Technology, for being "overly engaged in the minutia of technical and standard-setting activities and overly reliant on a use-case driven model."
Rein said in the interview that her opinion in this area remains unchanged.
On deaf ears
"There is so little foundational policy to guide the use cases," said Rein, who, according to her biography on the NCL Web site, holds a master's degree in public policy analysis from the University of Rochester. "We've been writing to HHS about that and it just falls on deaf ears. Until we have a leadership change, it's not going to be any different."
But Rein said the main reason she stepped down was that she felt stretched thin by other duties at the NCL and couldn't keep up with the sheer volume of highly technical information pulsing through HITSP and its work groups.
A recent posting of HITSP panel members listed 69 people, many of whom represent corporations in the healthcare IT industry, standards development organizations or other large healthcare groups.
Rein said the volume of HITSP e-mail traffic was tremendous and, "at a certain point, I no longer felt comfortable with my ability to keep up. My ability to have any significant impact was constrained. I felt bad about having any representation that there was a consumer impact (at HITSP).
"I feel the people who had been active in HITSP were people who had been assigned to it by their respective organizations and that was part of their full-time job," Rein said. "Some of these vendors have people who follow this and that's what they do."
Since privacy and consumer organizations are small and their staffs spread out, Rein said it will be a challenge for HITSP to find a replacement who won't face the same problem she did.
"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 hasnt 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."
Rein said she also plans to leave the NCL on April 13, but that move had no bearing on her decision to leave HITSP. She will be moving into a staff position with the not-for-profit health research and policy organization, AcademyHealth, Washington, on May 1.
Privacy issues still a priority
As such, Rein said she will not be moving away from healthcare privacy and IT issues.
"They want me to keep on my consumer hat and add the health services research hat," Rein said. She said she will continue to serve on the AHIC confidentiality, privacy and security work group, which Feldman left, and on the State Alliance for e-Health, created last September under a $1.99 million contract by HHS with the National Governors Association. The alliance is tasked with, among other things, looking at variances in state privacy laws and their impact on health information exchange. The alliance is only one of the more recent federal efforts to preempt state privacy laws.
A new "prototype" use case prepared by ONCHIT lists under the title, "Issues and Obstacles" to "realizing the full benefits of health information technology" language targeting state laws controlling access to patient laboratory test results. Many states have stringent limits on the transmission of test results by laboratories, requiring the labs only to send the results back to the clinician who ordered the test. The 22-page ONCHIT document dated March 22 notes that these state privacy laws "would need to be analyzed and potentially altered in order to enable timely access to laboratory test results which require clinician interpretation." The use case is addressed to AHIC's consumer empowerment work group, which is looking to promote the use of personal health records. But another AHIC work group, to promote physician adoption of electronic health-record systems, had as its initial use case facilitating the electronic movement of laboratory results.
"There are certain parties who are pushing these things and others who don't see that there needs to be any push at all," Rein said. "I think there are some states that want stronger protections.
"These problems are completely solvable by technology," she said. "The barrier is not the technology; the barrier is the unwillingness of certain entities that have a strong stake in expediency and efficiency that will fight this. We'll see how this plays out."
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