Data Based Advocacy
Patient advocacy is a continuous learning process. It is a continuous process because knowledge is an ever evolving process. Even those of us that have had the honor of attending conferences like Stanford University’s Medicine X (#Medx) are students of advocacy, we just happened to attend an excellent school. So if any so called patient advocate ever argues differently, please immediately unfollow them. They don’t fully understand the game of advocacy which will cause issues for you if you don’t unfollow them.
Earlier this week, the game of advocacy humbled me. While discussing data security and safety with a fellow #Medx epatient scholar, she sent me an article about a patient dealing with unbearable pain due to endometriosis (a definition of endometriosis for your reference https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656). The article talked about how the patient was denied pain relief due to her high NarxCare score. NarxCare score? I’m a long term chronic pain patient but had no idea what a NarxCare score was. Thanks for the humble pie patient advocacy.
Like a good patient advocate, I immediately went to the great oracle Dr. Google for an explanation and history of NarxCare. Simply put, NarxCare is a set of databases and algorithms that where developed by Bamboo Health (formerly known as Appriss Health), a data analytics company who develops software tools, in order to help combat our country’s overdose crisis. Narx scores exist for narcotics, sedatives, and stimulants: all of which are common medications for chronic pain patients like me. A patients score is based on the number of prescriber’s in a patient’s story, number of pharmacies utilized by the patient, milligram equivalents, and any overlapping prescriptions. These scores are designed to bring awareness to the significant amount of a state’s Prescription Monitoring Program (PMP) data.
The first red flag in my research of Narx scores. According to literature by Appriss Health, Narx scores that “raise concern should trigger a discussion, not a decision.” Sounds noble and patient centered right. Wrong. If a patient like me, who is considered to be a highly engaged and experienced patient advocate, are not aware of these scores and how they are calculated then how am I supposed to provided an informed opinion during a “discussion”. Second, in this political climate of overdoses and state legislatures passing conscience clauses, do we really think a pharmacists or any provider who utilizes narcotics will participate in a discussion with a patient who has a high Narx score when they have the legal protection to refuse treatment to whomever they want. Not to mention the recent Supreme Court decision that now allows businesses to refuse service to however they want. Pharmacist's and provider’s can simply argue that it is in the best interest of the patient not to receive their prescribed narcotic because of their high score and I don’t see anyone but the patient disagreeing with the so called “professional opinion”.
Now my purpose for this post is to learn more about NarxCare and the scores it produces, not to talk about red flags. That will come. Let’s get back to answering the who, what, when, where, and why of Narx scores.
According to Idaho Administrative Procedure Act (IDAPA) 27.01.01.204, “Specified data on controlled substances must be reported by the end of the next business day by all entities that dispense controlled substances in or into Idaho and prescribers that dispense controlled substances to humans. Data on controlled substance prescription drug samples does not need to be reported.” This is both alarming and concerning as a patient advocate, IDAPA 27.01.01.204.01 states that “Online access to the Board’s PMP is limited to licensed prescribers and pharmacists, or their delegates, for treatment purposes.” In English Alan, IDAPA allows Idaho’s Prescription Monitoring Program to collect data on my prescription opioid use but does not mention any rights I might have to monitor or audit the information the program collects.
Here is where it gets confusing. Idaho Code (IC) 37-2726(2f) does state that “An individual (that would be me) who is the recipient of a dispensed controlled substance entered into the database may access records that pertain to that individual, upon the production of positive identification, or that individual’s designee upon production of a notarized release of information by that individual.” This Idaho Code also gives any individuals (you might want to grab a coffee or 12 because this list is going to be long) employed by divisions, Idaho boards, or other states’ licensing entities charged with the licensing and discipline of practitioners; federal, state, and local law enforcement who have been tasked with enforcing laws relating to controlled substances; anyone authorized by Medicare, Medicaid, Division of Health and Welfare, and Public Health to monitor and enforce department responsibilities; any practitioner or their authorized delegate licensed in Idaho or any other state to disperse controlled substances, a pharmacist or their authorized delegate; anyone authorized by a judge; prosecuting attorney’s or their authorized staff on the state, county, or city level; and any medical examiner or coroner who is charged with determining a cause of death the right to access my health data. Was I correct, did you need 12 coffee’s to get through this list of people that have access to my medication data?
If that were not a scary long list of individuals who have access to my medical data, IC 37-2730A(4) gives pharmacists and practitioners the right to share information obtained through the PMP with an other pharmacists or practitioners.
Narx scores range from 0 - 999. Scores have a 2 year time element so recent activity is weighted more than older activity. High scores are not intended to be abuse scores however very high scores supposedly have a higher statistical likelihood that the patient has exhibited some form of misuse in their PMP data set.
On the surface, NarxCare sounds like a beneficial tool for all. It takes a bunch of PMP data and turns it into a easy to understand visual tool. NarxCare marketing machine emphasizes their scores are a tool to start a discussion, not to diagnosis abuse. Here is the dirty little secret that politicians and government employees will never admit, legally prescribed prescription drugs are not a problem and never have been. Illicit drug use has been and will continue to be the main cause of our country’s overdose crisis. It’s citizen X, who doesn’t have a chronic pain diagnosis, buying fentanyl from a drug cartel so they can satisfy their addiction, not me using opioids in order to control my moderate to severe chronic pain from rheumatoid arthritis or my rock climbing fall so I can go hiking in the mountains of Idaho.
My conclusion based on the info I’ve obtained so far from Dr. Google and the pharmacist at Fred Meyer who printed a copy of my Narx report for me. If patients only had one or maybe two illnesses, I could understand using math in order to come up with a Narx risk score. Unfortunately for Narx, patients are human first which means their lives can’t be boiled down to a high school statistics word problem. I’m a perfect example. The amount of my diagnosed conditions takes up a computer screen. In addition, I have experienced several severe physical trauma’s for which medical literature has not fully explored. So my question is this, what is the textbook recommendation for a person with rheumatoid arthritis, degenerative disk disease, severe osteoarthritis, and facet joint syndrome (just to name a few of my conditions) who fell off a cliff rock climbing and has been involved in something like 5 different car wrecks. If a person with rheumatoid arthritis should be prescribed 4 opiates a day based on solid scientific research, does that mean I should be prescribed 16 since I have 4 major conditions instead of just one. Should I be prescribed 20 since I fell off a cliff and have 5 car wrecks, its not like there is a lot of literature about severe physical trauma. Why do we accept software that boils my patient story down to a number? I just want to go hiking and ideally skiing, with little to no pain while I’m playing.
P.S. If you are interested in the article about the patient with endometriosis that I received, here is a link to it: https://www.wired.com/story/opioid-drug-addiction-algorithm-chronic-pain/
