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Medicine

Dispute Over Database Use Could Disrupt US Organ Transplant System (wric.com) 20

"The flow of lifesaving organs to 63 U.S. transplant centers could be disrupted..." reported the Washington Post on Monday, "by a dispute over the use of data."

Or, as a local news station WRIC puts it, "Two entities dedicated to fighting to save lives through organ transplant operations are now fighting with each other." Buckeye Transplant Services filed a lawsuit against the United Network for Organ Sharing — or UNOS — on July 3 after the Richmond-based non-profit accused the transplant screening service of putting donor and patient privacy at risk.

UNOS claimed Buckeye did so by using technology to gain unauthorized, improper access to a DonorNet database. Buckeye denied any wrongdoing and insisted that the company has always complied with data accessibility protocol... This isn't UNOS's first controversy, but the reason this particular debate has become high-profile is due to rumors that it could impact transplant operations. Prior to the lawsuit, UNOS threatened to cut off Buckeye's access to data necessary for its operation. UNOS still insists that no transplant program will experience any interruptions in receiving organ offers as a result of the dispute. However, Buckeye warned that if it loses access to crucial data, 63 hospitals across the country — two in Virginia — could have to take on extra burdens.

One of those healthcare systems, the University of Virginia's Transplant Center, told 8News that its team is closely monitoring the situation and is already coming up with plans to prevent any legal hiccups from interrupting the lifesaving organ donation process.

Buckeye was involved in over 13% of America's organ transplants in 2022, according to figures cited by the Washington Post. "Buckeye said it is doing nothing wrong," according to the article, "and that other organizations across the transplant system act similarly." Meanwhile, UNOS's general counsel "stressed that cutting off Buckeye is a last resort in a negotiation that has been underway for two months," the Washington Post reported. "Certain features of Buckeye's electronic systems are capable of and have collected from UNOS systems various large volumes of patient-specific and facility-specific information related to transplant services," a UNOS attorney wrote to Buckeye on June 21. Livingston, the UNOS general counsel, said in an interview that the data belongs to UNOS and that transplant centers are able to obtain it from the organization if they want it. But Buckeye is not allowed to collect it in bulk and sell it to its customers. He said if Buckeye retrieves and "scrapes" the data, UNOS does not know how well it is secured, whether it is being "misused or mishandled" and how it is being stored. He also said Buckeye could create an alternate database with the information.
On Tuesday the Washington Post reported that UNOS had issued a two-week extension (through July 19): Anne Paschke, a spokesperson for UNOS, said the group provided the extension to "allow the court an appropriate amount of time" to consider the company's request for a temp restraining order. "We are confident in our position," Paschke said... Buckeye sued UNOS in federal court on Monday seeking an injunction that would stop the nonprofit group from blocking its access to the national transplant database system...

[The U.S. Health Resources and Services Administration] unveiled plans in March to overhaul the transplant system, including changes to the 37-year monopoly UNOS has held as manager of the organ database... Buckeye is potentially interested in bidding for a part of the contract UNOS now holds, according to company representatives. Its lawsuit contends UNOS "has monopolistic intent to squash the development of technology that could eventually supplant" the UNOS transplant system.

Thanks to long-time Slashdot reader belmolis for sharing the article.
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Dispute Over Database Use Could Disrupt US Organ Transplant System

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  • I am not surprised anymore by medical privacy craziness. We didn't see much footage of the million or so people dying in hospitals from COVID because of patient privacy. Just imagine how many lives that could have saved, if people saw more of the risk of death, and took proper safety precautions more seriously because of that.

    I don't think patient privacy was ever meant as a means to cause more people to die. (Especially in the case of organ transplants.)

  • by Sebby ( 238625 ) on Saturday July 08, 2023 @05:54PM (#63669215)

    First:

    UNOS's general counsel "stressed that cutting off Buckeye is a last resort in a negotiation that has been underway for two months,"

    So this has clearly been a point of contention for quite some time - two months!?! That's quite sad for such a vital system, which brings me to the second thing:

    Second: WTF isn't this system run by a (probably federal) agency, instead of private entities of which at least one clearly has more self-interests in all of this than for anyone else?

    • WRT to your "Second" point, the Federal government routinely contracts out lots of things to the private sector. For example Medicare is operated by contractors under the oversite of the Centers of Medicare and Medicaid Services. The contracts are competitively bid. These contracts are similar to the one under which UNOS operates.
      • by Sebby ( 238625 )

        Perhaps there should be a clause in those contracts that state that if they hold the services hostage, the contract is automatically terminated, and they are barred from bidding in the future. Or, that they must go through forced arbitration like private companies love to use so much.

      • Ross Perot made his fortune with 1960s EDS mainframe service bureau contracts for Medicare and Medicaid. If I ever need a kidney, I'll probably end up with Lockheed-Martin somewhere in the money funnel.
    • by beelsebob ( 529313 ) on Saturday July 08, 2023 @06:18PM (#63669279)

      Why the fuck isnâ(TM)t the entire us health care system run by a (probably federal) agency. Oh right⦠because thereâ(TM)s a profit to be made! The American dream at work!

  • by Stonefish ( 210962 ) on Saturday July 08, 2023 @06:39PM (#63669339)

    This is a great argument for why this type of service should be government run.
    The information is confidential and private, everyone has a stake in it and there are enormous benefits in economies of scale.
    Instead you have two organisations fighting over intellectual property and dollars. While neither may has done anything wrong the outcome itself is obviously wrong and inefficient.

    This is why the US spends more on healthcare per capita with far worse outcomes than virtually every other western country. For more information on this read
    https://www.commonwealthfund.org/publications/fund-reports/2021/aug/mirror-mirror-2021-reflecting-poorly

    The "Key Findings": The top-performing countries overall are Norway, the Netherlands, and Australia. The United States ranks last overall, despite spending far more of its gross domestic product on health care. The U.S. ranks last on access to care, administrative efficiency, equity, and health care outcomes, but second on measures of care process.

    • by hey! ( 33014 )

      UNOS is a private non-profit entity that is chartered under a US Federal Law [cornell.edu].

      One of the provisions of that law is that UNOS shall establish :

      ...a national system, through the use of computers and in accordance with established medical criteria, to match organs and individuals included in the list, especially individuals whose immune system makes it difficult for them to receive organs ...

      For whatever reason Congress thought a private non-profit corporation was the best way to do this particular function.

      Wi

      • For whatever reason Congress thought a private non-profit corporation was the best way to do this particular function.

        They were wrong. It was probably due to some kind of corruption.

        Without hearing Buckeye's side of the controversy, UNOS's complaint seems reasonable on the face of it. This data is *extremely* sensitive, so anyone granted access to it needs to follow the TOS. Those terms explicitly forbid data scraping, for reasons that would be blindingly obvious to any competent database administrator or IT professional, but especially one working in health care.

        If there's a problem here then it should be covered by HIPAA. If there is a problem and HIPAA doesn't cover it then the right place to fix this problem is there. HIPAA is taken seriously... when it applies.

        • by tlhIngan ( 30335 )

          For whatever reason Congress thought a private non-profit corporation was the best way to do this particular function.

          They were wrong. It was probably due to some kind of corruption.

          Flip side: Government agency spends millions on IT systems that aren't up to the task.

          I mean, the IRS has been trying to get rid of their 60s era tax computer for decades now, and at least 3 times they've tried to replace it, and 3 times the system was late, over budget, buggy, and didn't work half as well as the existing system

          • the IRS has been trying to get rid of their 60s era tax computer for decades now, and at least 3 times they've tried to replace it, and 3 times the system was late, over budget, buggy, and didn't work half as well as the existing system. Hundreds of millions of dollars wasted.

            Yes, and every time the work was done by a contractor. In 1998 for example, computer science corporation was awarded the contract [nytimes.com]. The hard part is getting government to do the work itself, because there's always some fuckhead contractor with a hand out.

  • Government continues to have breaches because they don't always follow their own guidelines.
    Private contractors continue to have breaches because not everyone in the c-suite is trust worthy.
    And the public, government front line workers and the contractors front line workers are stuck in the middle.
    Hoping they don't get hosed.
  • I'm ready. Let's go. I've got an extra kidney and am eager to donate it to an injured Ukrainian soldier who has no kidneys. Where do I sign up?

As far as the laws of mathematics refer to reality, they are not certain, and as far as they are certain, they do not refer to reality. -- Albert Einstein

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