What is the Long Term Care Data Cooperative?

    The lavishly funded American Health Care Association/National Center for Assisted Living publishes Provider Magazine – a very slick piece of propaganda, the purpose of which is promotion of the nursing home industry.  In the November/December 2022 issue, the magazine included an article entitled Where Innovation Meets Data: The Long Term Care Data Cooperative.

    This newly minted institution is, according to the author, “the first of its kind in the world.” The author provided – unwittingly, I’m certain – a scary and chilling description of this so-called “innovation:” “Formed in partnership by AHCA/NCAL and Brown University and funded by the National Institute of Aging, the Cooperative is an effort to improve the quality of care within skilled nursing care centers through a new – and collaborative – approach to gathering and sharing patient data.” 

    According to the article this is a “large-scale effort” in which any long-term or post-acute center can enroll.  The data will apparently come from multiple electronic record (EMR) software vendors “into a single repository of information.”

Who Gets the Data?

    Given the industry’s money and political power, advocates, researchers, and activists should be very wary of any flow of data through the health care system controlled by the AHCA/NCAL.  I can think of no other government data set collected from taxpayer funded contracts that is controlled by an industry as opposed to the funding agency.  This cooperative – industry front organization – will provide the data to “vetted federally funded researchers.” 

    And how will the vetting process work?  According to the article, it will work this way:  “Researchers will need to move through an extensive approval process to gain access to the Long Term Care Data Cooperative, which will include input from participating providers, who have the opportunity to review each application and decide on appropriate uses of data.”

Advocate, Researchers:  Reread the Above Quote and Think Seriously About It!

    If providers and the AHCA/NCAL decide who has access to the data and how it is used, this entire enterprise will benefit the industry without any commitment to evaluation of care on behalf of the U.S. taxpayers.  Those of us with an allegiance to science, integrity, and research ethics and who have had access to large government datasets, can quickly recognize how scientifically and ethically flawed this process is.

    Think about what the industry has been able to pull off with the imprimatur of Brown University and the National Institute of Aging.  A government agency is funding industry control over data that belong to the people of the United States.  This has huge scientific, democratic, and moral implications.  This is not the way the government should work, and as far as I know, has ever worked in relationships with qualified researchers.

Why is Hospital Data So Accessible While Nursing Home Data is So Inaccessible?

    My department chair at Kansas University Medical Center asked me to design a course on large datasets and statistics – essentially a data analytics course for PhD students.  I did that. In that endeavor, I used the H-CUP hospital dataset, which I purchased each year for $300 from the Agency for Health Quality & Research (AHRQ).  The file included approximately 200 variables and eight million cases (de-identified patient data).

    The process for obtaining this dataset is rather simple (see:  https://hcup-us.ahrq.gov/).  Researchers simply need a legitimate purpose for using the data and be willing to sign a data use agreement.  No hospital corporation had any role in vetting users of the data nor a say in the the nature of the research.  Although I retired from KUMC, I can continue to obtain the data and have indeed ordered it on occasion.

Democracy Requires Openness and Information to Which the Public Has Access

    When residents of a country are shut out of the flow of information critical to knowledge of how their taxes are utilized, they have no say in governance, and, therefore, no real democracy.  They cannot advocate intelligently and effectively for their rights as funders of programs that should benefit them.  When they are kept in the dark and subjected to what monied interests choose to tell them, they lose their right to expect a competently run program for which they are paying.

    When powerful industries withhold, misrepresent, and misuse data, the taxpaying public will of necessity be cheated.  In a democracy, residents have a right to know the results of programs which they need and for which they are paying.  However, as authoritarianism grows, concentrated wealth and power increasingly filter information. 

    The AHCA/NCAL misrepresents financial data on behalf of its corporate members with impunity.  They not only get a pass on their lack of integrity, their claims regarding providers’ financial hardships due to low Medicaid reimbursement are repeated by some well-known economists in peer reviewed journals.  Never have I seen evidence provided for these claims.  Conversely, I can produce, and have, produced an abundance of evidence to the contrary.

    It is critically important that advocates, activists, and, hopefully, journalists confront the industry’s misrepresentations.  Their propaganda is deadly.  Rather than provide adequate care, too many nursing homes extract maximum cash while providing minimal care.  It seems to me that AHCA/NCAL-Brown University data enterprise is configured to continue that unsavory characteristic of long-term care industry.