Clinical Decision Support (CDS): Accessing Data You Don't Even Know Exists

In a recent WIRED article, The Pain Was Unbearable. So Why Did Doctors Turn Her Away?, Kathryn, who was hospitalized due to complications and suffering from her endometriosis, was denied pain medication for her excruciating condition.

I don’t think you are aware of how high some scores are in your chart,” the woman said. “Considering the prescriptions you’re on, it’s quite obvious that you need help that is not pain-related.“ 

According to the article, Kathryn was unexpectedly abruptly discharged from the hospital while still in poorly controlled pain. Two weeks later, she reported being “terminated” from her gynecologist’s practice.

“Kathryn received a letter from her gynecologist’s office stating that her doctor was “terminating” their relationship. Once again, she was mystified. But this message at least offered some explanation: It said she was cut-off because of “a report from the NarxCare database.”

According to the Appriss Health website, NarxCare is a “robust analytics tool and care management platform that helps prescribers and dispensers analyze controlled substance data from Prescription Drug Monitoring Programs (PDMPs) and manage substance use disorder. NarxCare automatically analyzes PDMP data and a patient’s health history and provides patient risk scores and an interactive visualization of usage patterns to help identify potential risk factors.”

NarxCare reports include Narx Scores or risk scores demonstrating a past prescription history of opioids, sedatives, and stimulants. Their proprietary algorithm considers a variety of weighted measures to determine an Overdose Risk Score that ranges from 000 to 999. The higher the score, the higher the risk of an unintentional overdose.

In a patient information sheet, Appriss Health states, “None of the information presented (in the NarxCare Report) should be used as the sole justification for providing or refusing to provide medications. The information on this report is not warranted as accurate or complete.

In Kathryn’s case, she determined she was wrongly red-flagged, and her scores were abnormally high due to prescriptions her sick, elderly dogs needed.

The two canines had been prescribed opioids, benzodiazepines, and even barbiturates by their veterinarians. Prescriptions for animals are put under their owner’s name. So to NarxCare, it apparently looked like Kathryn was seeing many doctors for different drugs, some at extremely high dosages.

Had Kathryn not looked into the matter, she would have never known about the error in her reporting.

If other stakeholders have access to NarxCare, or any other CDS, data, and reporting, patients should also have access, especially if the report is not warranted by the manufacturer as accurate or complete and is used to determine the course of their care.

In the FAQs of the patient information sheet, Appriss Health states patients should “contact their state PDMP program to determine if and how they may obtain a copy of their PDMP Report.” After reviewing the NJ Prescription Monitoring Program site, I was unable to find any avenue for patients and consumers to request copies of their NJ PMP data or avenues for filing amendments should any errors or discrepancies arise…such as the inclusion of a pet’s narcotic prescriptions. I have emailed for further assistance and will report back.

As a patient, if my doctor, hospital, cancer center, or any member of my care team is referring to the NarxCare report, I want a copy of it too for my continuity of care purposes. Patients living with pain in the chronic pain, chronic illness, and disability communities, as well as victims of abuse and trauma, frequently express their concerns on how different CDS strategies may erroneously negatively impact their care. In this piece, What Every Patient Should Know About NarxCare, Rochelle Odell writes,

As pain patients, we need to be acutely aware of the negative impact this analytics tool can have. Many of us have already been required to sign pain contracts, take drugs tests, and undergo pill counts. In 2019, Medicare will adopt policies making it even harder for patients to get high doses of opioid medication. Some insurers are already doing it. We’re already being policed enough as it is. I intend to ask my physician, pharmacist, and case manager if they utilize NarxCare. So should you.”

On Twitter, as part of a discussion thread in response to the WIRED article, Andrea Downing (@BraveBosom), security researcher, patient advocate, and co-founder of The Light Collective, pointed out that “as part of our designated record set, HIPAA covered entities are required by law to share the data and risk scores directly with patients. So… let’s start asking about these risk scores!”. She included a screenshot of the HIPAA Right of Access defining information included in the designated record set, as per below:


As a patient, we don’t know what we don’t know. With CDSS and AI-based decision-making increasingly woven into the workflows of patient care at healthcare delivery organizations (HDOs) and provider practices across the nation, patients need to know what data and reports are being used to make decisions about them and their care.

As patients, we should request from our hospitals, physicians, and cancer centers any data, reports, scores, etc. generated from CDS tools about us. Speak to your doctor and care team if they use clinical decision support like NarxCare reports and scores to guide your care. Request copies of these reports and review the information there. Ask questions about how the scores may be impacting your care. You can also request a copy of these reports through the medical records department.

We need to bring greater awareness and transparency about the data being generated about us. Together, we can make CDSS more aligned with humane patient care, more robust, all while also addressing stigma, bias, and inequities that may be introduced by current black box algorithms.

Yours In Unblocking Health,

Grace Cordovano, PhD, BCPA

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