Big Brother in Your Medicine Cabinet

If there’s one thing I’ve learned from working as a doctor, it is that “what the doctor ordered” is not always what the patient gets.  Sure, I’ve encountered the usual obstacles—like pharmacy “benefit” (ha!) managers whose restrictive formularies don’t cover the medications ordered by their physicians—but I’ve also been amazed by the number of patients who don’t take medications as prescribed.  In psychiatry, the reasons are numerous:  patients may take their SSRI “only when I feel depressed,” they double their dose of a benzodiazepine “because I like the way it makes me feel,” they stop taking two or three of their six medications out of sheer confusion, or they take a medication for entirely different purposes than those for which it was originally prescribed.  (If I had a nickel for every patient who takes Seroquel “to help me sleep,” I’d be a very rich man.)

In the interest of full disclosure, this is not limited to my patients.  Even in my own life, I found it hard to take my antidepressant daily (it really wasn’t doing anything for me, and I was involved in other forms of treatment and lifestyle change that made a much bigger difference).  And after a tooth infection last summer, it was a real challenge to take my penicillin three times a day.  I should know better.  Didn’t I learn about this in med school??

This phenomenon used to be called “noncompliance,” a term which has been replaced by the more agreeable term, “nonadherence.”  It’s rampant.  It is estimated to cost the US health care system hundreds of billions of dollars annually.  But how serious is it to human health?  The medical community—with the full support of Big Pharma, mind you—wants you to believe that it is very serious indeed.  In fact, as the New York Times reported last week, we now have a way to calculate a “risk score” for patients who are likely to skip their medications.  Developed by the FICO company, the “Medication Adherence Score” can predict “which patients are at highest risk for skipping or incorrectly using” their medications.

FICO?  Where have you heard of them before?  Yes, that’s right, they’re the company who developed the credit score:  that three-digit number which determines whether you’re worthy of getting a credit card, a car loan, or a home mortgage.  And now they’re using their clout and influence actuarial skills to tell whether you’re likely to take your meds correctly.

To be sure, some medications are important to take regularly, such as antiretrovirals for HIV, anticoagulants, antiarrhythmics, etc, because of the risk of severe consequences after missed doses.  As a doctor, I entered this profession to improve lives—and oftentimes medications are the best way for my patients to thrive.  [Ugh, I just can’t use that word anymore… Kaiser Permanente has ruined it for me.]

But let’s consider psychiatry, shall we?  Is a patient going to suffer by skipping Prozac or Neurontin for a few days?  Or giving them up altogether to see an acupuncturist instead?  That’s debatable.

Anyway, FICO describes their score as a way to identify patients who would “benefit from follow-up phone calls, letters, and emails to encourage proper use of medication.”  But you can see where this is going, can’t you?  It’s not too much of a stretch to see the score being used to set insurance premiums and access (or lack thereof) to name-brand medications.  Hospitals and clinics might also use it to determine which patients to accept and which to avoid.

Independently (and coincidentally?), the National Consumers League inaugurated a program last month called “Script Your Future,” which asks patients to make “pledges” to do things in the future (like “walk my daughter down the aisle” or “always be there for my best friend”) that require—or so it is implied—adherence to their life-saving medications.  Not surprisingly, funds for the campaign come from a coalition including “health professional groups, chronic disease groups, health insurance plans, pharmaceutical companies, [and] business organizations.”  In other words: people who want you to take drugs.

The take-home message to consumers patients, of course, is that your doctors, drug companies, and insurers care deeply about you and truly believe that adherence to your medication regimen is the key to experiencing the joy of seeing your children graduate from college or retiring to that villa in the Bahamas.  Smile, take our drugs, and be happy.  (And don’t ask questions!)

If a patient doesn’t want to take a drug, that’s the patient’s choice—which, ultimately, must always be respected (even if ends up shortening that patient’s life).  At the same time, it’s the doctor’s responsibility to educate the patient, figure out the reasons for this “nonadherence,” identify the potential dangers, and help the patient find suitable alternatives.  Perhaps there’s a language barrier, a philosophical opposition to drugs, a lack of understanding of the risks and benefits, or an unspoken cultural resistance to Western allopathic medicine.  Each of these has its merits, and needs to be discussed with the patient.

Certainly, if there are no alternatives available, and a patient still insists on ignoring an appropriate and justifiable medical recommendation, we as a society have to address how to hold patients accountable, so as not to incur greater costs to society down the road (I’m reminded here of Anne Fadiman’s excellent book The Spirit Catches You And You Fall Down).  At the same time, though, we might compensate for those increased costs by not overprescribing, overtreating, overpathologizing, and then launching campaigns to make patients complicit in (and responsible for!) these decisions.

Giving patients a “score” to determine whether they’re going to take their meds is the antithesis of good medicine.  Good medicine requires discussion, interaction, understanding, and respect.  Penalizing patients for not following doctors’ orders creates an adversarial relationship that we can do without.

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24 Responses to Big Brother in Your Medicine Cabinet

  1. Rob Lindeman says:

    Dr. Balt,

    Maybe I’m not feeling cynical this morning, but I’m failing to see evidence that the adherence score will be used to penalize people. Is this inevitable?

    • stevebMD says:

      Rob, it’s a perfect tool for risk stratification. Why else would FICO be doing this? Next time you apply for health insurance, is it really that far-fetched for your insurer to run a “med adherence check” (and potentially deny coverage), just as your bank would run a credit check when you apply for a loan?

  2. Jackie says:

    This reminded me of another article about medication compliance, oops adherence, that was in the New York Times recently:

    http://newoldage.blogs.nytimes.com/2011/06/15/a-dose-of-confusion/

    In my opinion, the suggestions they had to improve adherence were too “one size fits all” and could be dangerous in some cases. For example, some individual medications only work properly if taken in a certain way (empty stomach, nothing else ingested for an hour) or can be affected negatively if taken along with vitamins. Others can be lumped together, eg “morning meds”, in a safe manner while sometimes a pill that should be taken “every 12 hours” should not be taken with a pill that should be taken “twice daily.” In the NYT piece, all of these complications were ignored.

    As for today’s post, you write that “FICO describes their score as a way to identify patients who would “benefit from follow-up phone calls, letters, and emails to encourage proper use of medication.” What is the “proper use of medication” in the view of FICO? I doubt very much that they are going to look through the fine print and tailor this “proper use” to each individual. A number-cruncher determining the “proper use” could be detrimental to a patient’s health and run up the health care tab in the long run.

  3. Carol Levy says:

    We get penalized all the time for not followinig orders: we get sicker, need for more tests, drugs, etc. It is no on;e’s business but that of the doc and the patient. In full disclosure – I am a non compliant patient – I do not do the tests I should, I do not follow-up but everytime I see a doc I tell them that, and some know it about me and, to them, it is who I am and what I do.
    I do not take my neurontin as I should; 4 times a day (for chronic pain, not seizure) because i don;t want to have to bother with iI pay because I do sometimes get ‘tic’ pains. I immediately take an extra half or full pill and it all works out in the end.
    There are already too many people in the doctor’s office when we come for a visit. And I want my visit to stay there, I do not want the doc’s office becoming my ‘mommy’ and calling and emailing me – Now c’mon, you gotta do ( ). I’m an adult. Let me decide.
    Carol
    http://apainedlife.blogspot.com/

  4. Jackie says:

    “Not surprisingly, funds for the campaign come from a coalition including “health professional groups, chronic disease groups, health insurance plans, pharmaceutical companies, [and] business organizations.”

    And the Federal government. Big Brother himself!

  5. aek says:

    Two default views:

    1 – Your posts always provide excellent insightful commentary and lots of nutrient dense food for thought

    2 – Like most writing about healthcare compliance, this post also accepts the accepted default view – that medication is the primary health management strategy. But as you so aptly described up above, taking medications is quite a derangement to normal activities of daily living. It’s an added burden and a significant lifestyle change – it’s hard to do. So what about a bit of a paradigm change? For example, what about first managing patients by addressing root causes – via sleep hygiene, mildly ketotic diets, gluten free/no added sugar diets, incorporating healthful activity, etc. The notion of group patient visits is beginning to build some steam. It seems to me that it would have applicability for the patient population that psychiatrists see.

  6. Carol Levy says:

    Pain patients are the only onss to my knowledge who actually can be fired, per an opiod contract, if they are non compliant.
    I also just found out about a new drug, Abstral, a fentynel based med. The opiod contract comes from the pharmaceutical company so you now have them in the consultation room with you as well. (And if you refuse to sign a disclosure info agreement they will not let you have the med.)(http://docs.google.com/viewer?a=v&q=cache:lfse0d1698gJ:https://www.abstralrems.com/AssureUI/AssureUI/pdf/resources/patient-prescriber-agreement.pdf+abstral+REMS+contract&hl=en&gl=us&pid=bl&srcid=ADGEEShGa_J_Tc0SeAX4eacCdwecDuLBpj-cvmxfwIUDdaVr8FSv1IlicpLEjsFjP2YaJ0XTGjBvBog-UuYw5HVUyNwvWVDkrhv27bl2HhVzj_CIepbLPABAQ3OtcgvIaXt17y5Aueif&sig=AHIEtbRFne32d2FawWyoQS-wvgda2tSJ7g&pli=1 ) PDF address

    • Jackie says:

      The most restrictive contract I know of is for Accutane, an acne drug associated with high rates of birth defects. That drug comes with its own Federal registry/database. Details at:

      http://en.wikipedia.org/wiki/IPLEDGE

      Short summary: Every month, women of child-bearing age have to pledge that they are taking two forms of birth control, or unable to have children, or they don’t get the drug. The doctor and pharmacist also have to comply with the terms of iPledge every month, or they can’t prescribe/dispense the drug for that month.

  7. Carol Levy says:

    The difference is there is a known issue with accutane. Abstral is simply because it is an opiod, the presumption being abuse by those who receive it rather than patients being seen as trustworthy.
    One of the men in the http://www.womeninpainawareness.ning.com group had an interesting observation. He felt that drug abuser is becoming the synonym for chronic intractable pain patient.
    Accutane, Abstral, FICO – I wonder if this is a way to get the lawyers in the consultation rooms as well.

  8. duanesherry says:

    Dr. Balt,

    In my opinion, “non-compliance” is the only way to fully recover from a diagnosis of severe mental illness. In fact, being off drugs is part of the definition of ‘recovery’.

    How do people diagnosed with such things as ‘bipolar disorder’ and ‘schizophrenia’ recover?

    They do it in a variety of way… Each unique, as are the individuals themselves.

    In fact, not only do they ‘recover’… They often thrive!
    Not always because they are ‘symptom-free’… some are, some aren’t… Those who are not begin to look at their symptoms as great gifts… and they use them to do great things!

    You’re 90 percent of the way there… And I think one day, you’ll get there… I have faith that you will.

    Why?

    Because you’re honest.
    And it seems pretty obvious to me that you care deeply.

    As far as comments back to others… I choose to sit on my hands…. I need a break from spitting matches… Life is good!

    Duane Sherry, M.S.
    discoverandrecover.wordpress.com

  9. duanesherry says:

    Disclaimer:

    “Most psychiatric drugs can cause withdrawal reactions, sometimes including life-threatening emotional and physical withdrawal problems. In short, it is not only dangerous to start taking psychiatric drugs, it can also be dangerous to stop them. Withdrawal from psychiatric drugs should be done carefully under experienced clinical supervision.” – Peter R. Breggin, M.D.

    More here –
    http://discoverandrecover.wordpress.com/warning

    NOW I’m gonna sit on my hands.

    Duane

  10. Carol Levy says:

    All stoppoing of meds should be done with your doc’s approval/supervision when necessary.
    I used to love Breggin when I was in college but have learned over time that anyone who holds one position clear to the exclusion of most others has too much bias to be relied upon as one’s only source.

  11. Michael Swaddle says:

    Here in the UK we have the term “Concordance” to describe the adherence of which you talk. It’s a mubo-jumbo, that most don’t understand, that is supposed to describe the agreement of the patient that they will adhere to the regime.

    I notice that you don’t include Pharmacists in this saga of non compliance, over prescribing etc. Is their role in the USA simply one of supply? Do they not interpret drug instructions, keep records, counsel and inform their patients?

    They are supposed to here in the UK but rarely do so. Payment is according to quantity dispensed not quality of supply.

    • Jackie says:

      “Do they not interpret drug instructions, keep records, counsel and inform their patients?”

      Yes, they do all that. Pharmacists/assistants/technicians (anyone who handles the drugs) are licensed by the individual states. So, you have 50 different licensing authorities involved but the requirements would be pretty similar in all of them.

      A pharmacist (not assistant or technician) is required to counsel a patient when a new drug is being dispensed — after that they (in my state at least) will ask if you want a re-consultation each time you pick up your prescription. The patient then signs that a consultation was given or turned down (by the patient). Pharmacies also keep records, including a signed register of who picks up the drugs.

      In my state, certain non-prescription cold medications that can be used to cook up illegal drugs (crystal meth mostly) are kept “behind the counter” and the pharmacist has to keep a register of who is buying those, too, and limit the amount sold. There, a purchaser has to show formal ID, like a driver’s license, or they don’t get the cold meds.

      As we mentioned above, there is added paperwork for the pharmacist when Accutane or certain pain medications are dispensed.

      Pharmacists here also provide written details/instructions for the drugs you are taking (at my pharmacy, these are stapled to the bag at every purchase).

      But after all that, if the patient doesn’t “concord” (love it!), there’s not much anyone else can do.

  12. Jackie says:

    Slightly off topic, there’s a new web-site that enables patients throughout the U.S. to compare local doctors and hospitals on outcomes, costs, reviews, etc. Less Big Brother, More Patient Power!

    http://www.rwjf.org/qualityequality/product.jsp?id=72540

    I haven’t had time to check it out, but the idea sounds good to me — much better than the “phonebook” anyway.

  13. Me says:

    When FICO scores started, they were not used by employers or to set your insurance rates for automobiles and homeowners.

    Since the new score will gauge medication compliance based on diagnosis (I have bipolar disorder, which probably has a lot of non compliant patients since the drugs suck so much) that would automatically lower my med compliance score.

    How long before my bipolar diagnosis creeps into my FICO score? After all, people with bipolar go on spending sprees when they are manic, right? Everybody agreed it was unfair for the FICO score to be used to set homeowners insurance rates, but nothing was done. So if my bipolar diagnosis creeps into my FICO score, I am pretty sure nothing will be done.

  14. FunctionalAnonBPD says:

    Wishing this would be helpful and not hurtful to patients.

    Heck, I’m wishing someone would take a little more time than the 15 min med check or specialist visit to sit down and create a med schedule with me.

    Because well the metformin and provigil give me nausea and does better with food but the blood pressure meds must be taken without food so now thats two morning doses and should I set a pre-alarm for the bp meds (have done that before) and there is the allergy meds with the two different nasal sprays plus pills and oh my its a bad spring so here is more prendisone and you cant sleep, have some ambien, oh wait now you’ve got an infection, here is the augmentan and the promitazen because you tend to puke up the augmentan and try some probiotics and this prescription folate supplement, dont forget the nsaid for the headaches and carpal tunnel pain, congestion is not breaking up try sudafed for a few days, chest pain now try some benzos or not because it was allergy shot day today so the extra benadryl should calm you down and an please tell me somewhere in there is birthcontrol because I’m sure this mix cant be tolerable for a developing baby.

    Is it any wonder with an ENT, allergist, PCP, psych doc, sleep doc, gyn, and ortho surgeon I am noncompliant with something at any given time. I dont need FICO to tell me or my docs that.

    At 33 I am a shining example of over medicated. I fight back on new meds and all that seems to accomplish is making my docs think I’m a “bad patient.” Individually they may think I’m taking too many meds but not enough to think I should stop any one of their meds.

    (please forgive that I didnt look up med spellings)

    Would nice to see some funding put towards a scheduling app for my webos phone or google calendar. Hmm… google calendar does send sms reminders. Oh my, do I really want to know how many and often I take meds every day? My phone would never shut up.

    • leejcaroll says:

      I think functionalanonBPD hit on a very important part of the problem. Most patients have a ton of specialists yet, to my knowledge, it is rare for them to get on the phone and speak with one another so Doc A gives, X whihc cause z that requires trip to doc B who gives Y that causes R that means a trip to doc h and so on. If there was a team effort maybe everyone would benefit, the patient from possibly less meds, less bad interactions, less side effects, and the doc having more time for other patients because the number of visists and phone calls from the patient is no longer necessary in order to deal with all the med effects.
      Carol
      http://apainedlife.blogspot.com/

    • Jackie says:

      I’m not a doctor — or any kind of medical professional — but I hope you have someone looking at the “big picture” of your medications, for drug-drug-food-otc interactions.

      For example, Provigil is a wake-up drug and Benadryl is sedating so (to me) these shouldn’t be taken at the same time. And NSAIDs can be iffy as well.

      There are a few drug-checking programs online, but the pharmacist is a good person to talk to.

      • FunctionalAnonBPD says:

        they all have the same list of meds (all but one uses the same hospital systems EMR)

        my primary care doc and I have gone over them and I know there aren’t big red kill me flags right now with the mix. Provigil and the bithconrtol makes it somewhat less effective. Provigil plus sudafed will keep me up for days if I take too many doses of sudafed. Ambien plus benadryl equals 12hrs of passed out sleeping.

        the docs have worked together some. We do depomedrol shots instead of prendisone as it’s less chaotic on my mood. Primary doc changed BP meds off of beta blockers after concerns from pysch doc about its hit to my depression. In deference to the sleep doc and primary care doc my pysch doc makes me get on a scale to track weight when we started new meds and stopped those meds when the showed negative impact. She even consulted primary before we tried thyriod meds.

      • Jackie says:

        I’m glad that your doctors are co-ordinating care and looking out for you.

  15. A good friend (and critical thinker!) took the “Script Your Future” Pledge you mentioned above. This is how it went:

    You’ve Taken the Pledge

    Congratulations on taking the pledge. Print this out and use it as a daily reminder to take your medicine as directed and to take control of your future. You can even send it to a friend or share it with your family.

    My Pledges:
    I WILL develop “side effects.”
    I WILL be prescribed more medication for my “side effects,”
    I WILL find myself dependent upon meds, as the withdrawals will be more than I can bear.
    I WILL take my medicine.

    [that last one is automatic]

    The way they encourage family “involvement” in adherence is especially insidious. However, I do find it heartening that only 212 people have “taken the pledge” so far… and more than a few have done it sarcastically, it seems.

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    I played the fish in too quickly, which resulted in a chub of
    about 2lb was the first commercially available shooting head.
    These are very famous as a game and sport fish; they almost live in a big fishing rod in fire
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