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Abstract

  1. Top of page
  2. Abstract
  3. The Unintended Consequences of Privacy
  4. Reference
  5. AJT CONTRIBUTOR ALVIN E. ROTH WINS NOBEL PRIZE

Due to privacy restrictions, the SRTR no longer has access to Social Security death data. We take a look at what this means for transplantation research and patient care, and at possible solutions. Also this month, we recount some of the papers written by 2012 Nobel laureate Alvin E. Roth published in the pages of AJT.


The Unintended Consequences of Privacy

  1. Top of page
  2. Abstract
  3. The Unintended Consequences of Privacy
  4. Reference
  5. AJT CONTRIBUTOR ALVIN E. ROTH WINS NOBEL PRIZE

This year, there will be no January program-specifc reports from the Scientifc Registry of Transplant Recipients (SRTR) due to the Social Security Administration's (SSA) decision to halt distribution of data obtained from states in its Death Master File (DMF), for privacy reasons and to prevent identity theft. Since that decision, the Health Resources and Service Administration (HRSA), which administers contracts for the United Network for Organ Sharing/Organ Procurement and Transplantation Network (UNOS/OPTN) and also updates transplant program-specifc outcome information on the SRTR website, has sought other ways to access the death data.

Previously, the public DMF contained 89 million records. In November 2011, the SSA removed approximately 4.2 million records from this fle and will add about one million fewer records annually, according to the National Technical Information Service, which disseminates the DMF data on behalf of the SSA.

According to Patricia W. Potrzebowski, PhD, executive director of the National Association of Public Health Statistics and Information Systems (NAPHSIS), “SSA never had the authority to release state death records through the public DMF. This is because state records are governed by state statutes and regulations. State statutes and regulations vary as to who may access death record information. In some states, death record information is publicly available; in others, even the fact of death is held in strict confdence.”

Unfortunately, the limitations hit transplantation very hard. Bertram L. Kasiske, MD, project director for the SRTR, says, “HRSA cannot optimally manage organ transplantation in the U.S. without being able to disclose to transplant centers and the OPTN deaths that appear in the SSA DMF. These include deaths after placement on the waiting list, after transplantation and after living donation. There is currently no other reliable source of information.” Additionally, the Centers for Medicare & Medicaid Services (CMS) use the data for their surveillance and program quality assessments.

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Although media reports, such as a story in the New York Times,[1] noted the impact on research, Roslyn B. Mannon, MD, president of the American Society of Transplantation, wrote a letter in October 2012 to the Times editor (not published as of this writing) noting that “patient care will also suffer…. These data are a ‘must-have’ as they are utilized by HRSA and the OPTN for surveillance, monitoring and evaluation of transplant programs and are crucial to HRSA oversight of all U.S. transplant programs … as required by law.”

“I know that UNOS and HRSA are working for a short-term fix because, come January, we won't have any death data,” Dr. Mannon told the “The AJT Report.” “From a legal perspective, we may need another bill or amendment.”

Potential Solutions

Since late 2011, representatives from HRSA have met with CMS, which is an SSA-designated recipient of the death data. “We have been working with our colleagues at CMS to modify their data agreement, to allow us to continue to receive it,” says Christopher J. McLaughlin, chief of the organ transplantation branch in the division of transplantation at HRSA. As of November 2012, an agreement had not yet been worked out.

If HRSA and CMS are able to modify the CMS/SSA agreement, the next step would be to develop a process whereby OPTN and SRTR can independently verify the deaths that are listed, says McLaughlin. If an agreement doesn't happen between HRSA and CMS, transplant statisticians could go directly to the states to purchase death data. However, that option is both costly and cumbersome. Another option might be usage of the National Death Index (NDI), a database of state reports available from the National Center for Health Statistics (NCHS) at the Centers for Disease Control and Prevention (CDC). Discussions have taken place between HRSA and the CDC on this possibility, although an off cial determination has yet to be made.

Although some have argued that the NCHS data take too long to receive (currently about 18 months), this will soon change, says Charles Rothwell, director of vital statistics at the NCHS. “Because of all the concern about the reduction in DMF data, agencies have come to us and asked what we can do. We're trying to speed up the NDI. We usually wait until the last state provides us with their last record before we make data available. A slow state could hold this up for months.”

Beginning in July 2013, a joint effort among the CDC, the National Institutes of Health and the Agency for Healthcare Research and Quality will produce a new NDI process that will make a 90%-complete NDI report available six months from request. When f nal records come in, another report will be generated at no additional cost so that all state data are included. A different NDI report that includes cause of death (including contributing factors) should be available within nine months of the request, Rothwell says. The DMF has never included cause of death information.

Cost for the NDI varies, as it is a function of the database size and types of records submitted, and could run from a few hundred dollars to hundreds of thousands of dollars. For example, Rothwell says that if a medical group wants to search 10,000 patients from a clinical trial that ended f ve years prior, the cost would be approximately $7,800. For a large study of 50,000 chemical industry workers searched over a span of 30 years, the cost might be $105,000. He adds that HRSA has not been in touch with the NCHS, and that contact has been mainly from the Public Health Information Network and other portions of the CDC.

The critical key to getting more timely death data to users is the full implementation of electronic death reporting systems in all jurisdictions.

Patricia Potrzebowski, PhD NAPHSIS

KEY POINTS

  • SRTR no longer has access to nationwide death data, and this restriction will likely impact transplantation research and patient care.
  • Without these data, HRSA cannot disclose to transplant centers deaths that occur after placement on the waiting list, after transplantation and after living donation.
  • HRSA is working with CMS and other agencies to find ways to access the data, but has not yet found a solution.

States Association Suggests Collaboration

Dr. Potrzebowski says that the NAPHSIS states organization has developed the Electronic Verif cation of Vital Events (EVVE) system, which can provide birth and death information for government agencies. “Currently operational in 47 jurisdictions, the EVVE system provides the capability to quickly, reliably and securely validate birth and death information against 250 million birth records in vital record databases nationwide,” she says. “While not all of the 47 jurisdictions using EVVE currently support death queries, it is expected that additional states will soon add this option.”

Additionally, NAPHSIS is currently evaluating other ways to assist private sector entities when they can document a legitimate administrative need for the death record information. “The real tie-up for all this,” Rothwell says, “is that states need to have automated mortality registrations systems; many are still paper based.”

Dr. Potrzebowski agrees, adding that “the critical key to getting more timely death data to users, whether through the NDI or EVVE or another mechanism, is the full implementation of electronic death reporting systems in all jurisdictions.”

Meanwhile, at HRSA, McLaughlin says, “We see our efforts with CMS as our best way forward at this point, although we are exploring all of our options.”

AJT CONTRIBUTOR ALVIN E. ROTH WINS NOBEL PRIZE

  1. Top of page
  2. Abstract
  3. The Unintended Consequences of Privacy
  4. Reference
  5. AJT CONTRIBUTOR ALVIN E. ROTH WINS NOBEL PRIZE

THE 2012 NOBEL PRIZE IN ECONOMICS was jointly awarded to Alvin E. Roth, PhD, of Harvard University and Lloyd S. Shapley, PhD, of the University of California, Los Angeles, for the theory of stable allocations and the practice of market design.

Over the years, Roth has been a co-author of several articles published in AJT. His most recent contribution was a “Personal View-point” that appeared in the June 2012 issue of the journal and was entitled “Call to Develop a Standard Acquisition Charge Model for Kidney Paired Donation.” In the article, Roth and his co-authors proposed a Medicare Demonstration Project to develop a standard acquisition charge for kidney paired donation. They noted that a new payment strategy is required because Medicare and commercial insurance companies may not directly pay living do-nor costs intended to lead to transplantation of a benefi ciary of a different insurance provider. The model they proposed would reimburse paired donation expenses analogous to the proven strategy used for more than 30 years to pay for deceased-donor solid organ transplantation in the U.S.

Roth and his co-authors proposed a Medicare Demonstration Project to develop a standard acquisition charge for kidney paired donation.

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Alvin E. Roth

Roth was one of two authors in a May 2010 article in AJT entitled, “Kidneys for Sale: Who Disapproves, and Why?” Additionally, he co-authored “Nonsimultaneous Chains and Dominos in Kidney-Paired Donation—Revisited,” which appeared in the May 2011 issue of the journal. In the December 2011 issue of AJT, Roth and three other authors wrote a Letter to the Editor titled “NEAD Chains in Transplantation,” and in February 2008, he wrote a Letter to the Editor titled “Kidney Paired Donation With Compatible Pairs.”