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Home Perspectives

Perceptions Over Data

One is real and the other is imaginary

Jay K Joshi by Jay K Joshi
September 19, 2022
in Perspectives
4
Perceptions Over Data

A number alone hardly means anything. But in the right context, it means everything. This is the power of perspective.

It takes otherwise innocuous information and it provides meaning. In medicine, we rely on data. But data have no meaning. It is the importance we give data that provide meaning. It’s a perspective.

The problem with perspective is that it is not shared among everyone. No two people think about the same thing the same way. That much is obvious. And mostly, these differences are harmless. But in clinical medicine, these differences determine how patients are treated.

If one person comes into a clinic with shoddy clothes or is a bit agitated, then she will be treated differently from someone who is well kempt and poised. They both could have the same clinical conditions, have the same data in terms of vitals and blood labs, but the end results could be quite different.

This is something most patients with highly stigmatized conditions like chronic pain or substance use dependency understand. Indeed, at an individual level, most patients acknowledge experiencing an implicit bias, either going against them or in their favor. But when we zoom out, when we expand the scope from the patient to general health policy, we lose sight of this perspective.

As a result, broad data sets lose meaning at an individual level. In fact, applying data to individuals, more often than not, produces a cognitive bias. It appears often enough to warrant its own name, called ecological fallacy: errors that arise when an inference is made about an individual based on population level data.

What we glean from a population cannot apply directly to an individual. But that is the basis for standardized care. We take clinical data, codify the data through clinical studies into evidence, and unveil guidelines and policies under the premise of evidence-based medicine. It sounds so fancy. It’s damn near irrefutable – until it’s not, until we see errors that arise when we approach patient care in this way.

When we put data at the center of healthcare, we lose sight of everything around it. Data is like the nucleus of an atom, important no doubt, but the behavior of the atom is determined by everything around it, the electrons swirling about in the atomic void.

Similarly, the perceptions of data drive patient behavior, and determine clinical outcomes. It drives how we apply data and how we make individual decisions. We ignore it at our own peril.

For patients with chronic pain or substance use dependencies, that peril has become almost life-threatening. Everyday, millions of patients carry the burden of their diseases into emergency departments and physician offices. And leave bearing the invisible scars of stigma.

Data merely presents information. It does not guide decisions and it certainly cannot capture the behavioral effects of stigma. While we may gain a knowledge of facts and data, we apply them through our perceptions. The CDC guidelines on opioid prescribing implicitly acknowledge this, but they do little to integrate this phenomenon into actual practice. Instead, it merely pays lip service to the realities patients with chronic pain or substance dependencies face, offering half-baked suggestions on treating patients based on data of dubious origins.

Introducing morphine milliequivalent as a proxy for opioid abuse has done more to harm patients than any other unsound scientific theory in the past decade. It originated from one small study but somehow has been repeated over and over throughout policy while remaining conspicuously absent from further clinical study.

It is a number without context. It means nothing. Its importance derives solely from the power policy makers give to it. It is a perspective.

It is time for a new perspective – one derived not from policy makers, but from the patients themselves. It is time patients share their perspectives on the clinical encounter, so we can study the role perception plays in clinical outcomes.

How much of what we believe proves to be real, or how much of what we perceive affects what transpires. These two beliefs need not be mutually exclusive. In fact, they are not; they are uniquely interdependent, which means belief translates into outcomes and outcomes translate into beliefs.

To see this in real time, let’s start with the basic question: Does your provider trust you?

How strongly do you believe that you can tell when your provider does not trust you?
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Jay K Joshi

Jay K Joshi

Dr. Jay K Joshi serves as the editor-in-chief of Daily Remedy. He is a serial entrepreneur and sought after thought-leader for matters related to healthcare innovation and medical jurisprudence. He has published articles on a variety of healthcare topics in both peer-reviewed journals and trade publications. His legal writings include amicus curiae briefs prepared for prominent federal healthcare cases.

Comments 4

  1. Anon says:
    4 months ago

    You’ve got it-statistics should be considered when making a reasoned decision about care for an individual but shouldn’t cause a hard limit on any treatment, yet they are baked into the cake and treated as law in so many ways. “Evidence based” has become a meaningless term that can refer to the best designed study science has to offer or biased, poor “research” that unduly influences policy & law & locks patients into a life of misery or risks their death & puts physicians at risk of losing their security, livelihood (which overlaps so closely with reason for living in this group), and even their physical safety & freedom (prison). As a rare disease patient & MD with family history of rare disease who is married to another rare disease patient and MD, I unfortunately have loads of experience with this.

    I believe the magnitude of the risk to physicians and the social stigma and cumulative effects of being repetitively harassed by administration. insurers, and government for deviating at ALL from your peers even when it’s clearly appropriate and defendable and the sheer exhaustion of having to repeatedly defend oneself during time off actually influences critical thinking skills towards acceptance of the mainstream narrative, whether it is gaslit, subverted, camouflaged eugenics or some other atrocity. That causes moral injury. Not to mention the effects of the force of sheer repetition of messaging & shortage of time for proper assessment of literature that would make this more obvious. However, physicians still collectively have more status, power, and financial resources with which to lobby the government to affect change than do other citizens. Until Citizens United is repealed, campaign finance is reformed, antitrust law comes back, and our leaders are barred from insider trading, change must be accomplished through lobbying. .We need to ask our specialty organizations to make individualized care a serious priority. I can promise you, once you are sick, it matters not how great a physician or person you were, you have zero power. Best to push for change while you can. It will come for you and/or your family. Not to be dramatic, but
    “First they came for the socialists, and I did not speak out—because I was not a socialist.
    Then they came for the trade unionists, and I did not speak out—because I was not a trade unionist.
    Then they came for the Jews, and I did not speak out—because I was not a Jew.
    Then they came for me—and there was no one left to speak for me.
    —Martin Niemöller

    We are responsible for stopping this simply because no one else will unfortunately. Patients are stigmatized as valueless (disabled) or addicted, and their voices are not heard. Pain and addiction are not the same thing.

    Reply
    • Anon says:
      4 months ago

      And of course patients suffering from addiction deserve treatment & kindness, not stigma. They aren’t getting it.

      The opioid trials are a money grab that won’t benefit anyone except a few plotting individuals.

      Reply
  2. Alice Carroll says:
    4 months ago

    I’ve been in the midst of the Opioid Struggles for the past 15 years. No one doing a study or proposing guidelines asks the Chronic Pain patient, “How are you doing with opioid use over the long term?” Either they don’t trust us to answer properly, they don’t want to know what we have to say or they just form their own opinions based on . . . What? Truth is patients do very well on long-term opioid use, they reach a place where the drug stops the excruciating pain and a dosage can be kept at the same level, in my case over 17 years. There is no need more medication, there are no cravings for more and the pain is kept under control.

    I am angered by all the clamor to help addicts when there are far more people living in chronic pain who are unable to find doctors to treat their pain or others who have been dumped by their doctors because they fear government intrusion into their practices. How is this even legal? Most living with chronic pain only want to be able to have a better life and it is possible with opioid drugs. The media has cast these drugs as evil poisons who latch onto a person and extinguish your life. It is quite untrue. With use as directed they are a godsend in stopping pain. Those who need ever increasing dosages need more to reach a euphoric state. Why are addicts considered more important than those of us living in chronic pain? I believe the answer is that addicts are being used to gain a massive settlement from drug manufacturers. Blaming them for OD deaths. Chronic pain patients who safely use the same medications for years without abuse fly in the face of the scenario of the evil drug. Even though we now have studies that show it was not doctor prescribing that caused the opioid crisis https://www.frontiersin.org/articles/10.3389/fpain.2022.884674/full the bandwagon heads onward to find the riches they feel they so deserve.

    I fear that addicts that could be helped by funding programs that would lead to healthier lives and better outcomes will be left out as the prevailing public view is that addicts are criminals and should be put in jail where they can detox and addiction is their own fault. Why should any settlement money go to them? In many cases there is no oversight on the settlements awarded. Do you really trust that our political leaders will use the money to help those addicted get back their lives and become productive citizens? I’m waiting and watching.

    Reply
  3. Alice Carroll says:
    4 months ago

    I’ve been in the midst of the Opioid Struggles for the past 15 years. No one doing a study or proposing guidelines asks the Chronic Pain patient, “How are you doing with opioid use over the long term?” Either they don’t trust us to answer properly, they don’t want to know what we have to say or they just form their own opinions based on . . . What? Truth is patients do very well on long-term opioid use, they reach a place where the drug stops the excruciating pain and a dosage can be kept at the same level, in my case over 17 years. There is no need more medication, there are no cravings for more and the pain is kept under control.

    I am angered by all the clamor to help addicts when there are far more people living in chronic pain who are unable to find doctors to treat their pain or others who have been dumped by their doctors because they fear government intrusion into their practices. How is this even legal? Most living with chronic pain only want to be able to have a better life and it is possible with opioid drugs. The media has cast these drugs as evil poisons who latch onto a person and extinguish your life. It is quite untrue. With use as directed they are a godsend in stopping pain. Those who need ever increasing dosages need more to reach a euphoric state. Why are addicts considered more important than those of us living in chronic pain? I believe the answer is that addicts are being used to gain a massive settlement from drug manufacturers. Blaming them for OD deaths. Chronic pain patients who safely use the same medications for years without abuse fly in the face of the scenario of the evil drug. Even though we now have studies that show it was not doctor prescribing that caused the opioid crisis https://www.frontiersin.org/articles/10.3389/fpain.2022.884674/full the bandwagon heads onward to find the riches they feel they so deserve.

    I fear that addicts that could be helped by funding programs that would lead to healthier lives and better outcomes will be left out as the prevailing public view is that addicts are criminals and should be put in jail where they can detox and addiction is their own fault. Why should any settlement money go to them? In many cases there is no oversight on the settlements awarded. Do you really trust that our political leaders will use the money to help those addicted get back their lives and become productive citizens? I’m waiting and watching.

    Reply

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