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Medication Adherence: Shift Focus From Patients to System

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Every two weeks or so, I receive notice of yet another national conference aimed at solving the problem of our wide-scale non-adherence to prescription medications. This makes me cross. Each conference features expert reports about our misbehavior – who doesn't comply with what – and bewails the huge number of us who fail to adhere to the ideal schedule. Then each conference gives plenty of airtime to more experts describing smart pill bottles, apps that nag at us like a mom reminding a fourth grader to make his bed, and how patient communities can provide important information about our drugs since our clinicians rarely do.

Enough with blaming us for our approach to taking our (many) medications.

When clinicians and health systems start to take this issue seriously, such conferences might be useful. Until then, the statistics on non-adherence and efforts to improve our individual behavior are meaningless. Don't bother with the conferences or the interventions.

Before anyone starts fixing us, try fixing these three things.

Clinician prescribing skills: Even with growing recognition of the adherence gap, physicians rarely effectively prescribe medications to patients. What do we need to know? What the medication is called; what it is for; how to take it; how we'll know if it works; what to do about what side effects; who to contact for advice about them, and so on. What plan is in place to make sure we remember all this information after we have asked our questions and they have been answered in a way that we can understand?

Are these skills taught in medical schools? No. Are any board or certification questions asked of new docs or practicing ones – in general or specifically – on this topic? No. Is CME available to teach these skills? No.

From a sheer economy of scale perspective, clinicians should be the starting place for improving medication adherence. If communicating about the appropriate use of medication is not a priority for them, why should using medications as directed be a priority for us?

Medication labels: The pharmaceutical and drug distribution industries should be embarrassed. They have been working on a uniform method of clear communication on bottles, boxes, tubes and inserts since I started working on patient concerns in 1992. Hey – no urgency...

Have you gotten a prescription lately? If you have, you know that these different stakeholders don't have enough stakes in the outcomes for their ultimate users to summon the will to pursue much progress. Any discussion of health literacy should be directed not at us, but rather at the formidable barriers that exist for even the most health literate among us to decipher what the text on the label means and to have access to accompanying printed material that doesn't require a twelfth grade education and a magnifying glass.

Pharmacist availability and focus: Pharmacists can be worth pure gold in helping us understand how to make good use of our medications. Right now they are shielded from us by thoughtless "check this box" requirements (the small print that says you refuse counseling from this pharmacist), lack of availability and lack of privacy in most settings.

One rainy winter night in a pharmacy near the Seattle airport, I heard a gentle but persistent pharmacist counsel every person to whom he dispensed pediatric medications or antibiotics about the size of a teaspoon or dose, why it was important to take the medication for however long and invite them to come back if they had questions. Brilliant. Public health hero. Only problem? I sat there for two hours waiting for my prescription and I heard every word he and his customers uttered.

How many people walk out the door having paid for medications they don't know how to use correctly because they don't know they can ask for advice? Or they are too embarrassed to do so in front of an audience of fellow customers? Or maybe they're not willing to wait another 45 minutes for the busy pharmacist to tear herself away from pill-dispensing?

Yes, many of us – including me – struggle to take our multiple medications every day at the appropriate time with the appropriate contents in our bellies. Those of us who say we don't struggle are kidding. We struggle in many different ways for many different reasons: "Left my pills at home," "I couldn't find anything to drink/eat," "I was on the bus and forgot," "Can't afford 'em"... whatever the case may be. But all of us have in common these three experiences:

  1. We don't get complete information from our clinicians about why our medications are important and how to take them over time.
  2. Information about use of those medications is incomprehensible and often unavailable (online and off) to many of us.
  3. We lack easy access to counseling from our busy pharmacist.

Fix these, then let's talk about finding out just how big the problem of medication adherence is in this country. That is when efforts can be targeted toward what we can do to make better use of the medications we hope will end our suffering and save our lives.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Prescription Drugs   Medical/Hospital Practice   Patient Engagement   Health Information Technology   Medical Education   Jessie Gruman   Communicate with your Doctors   Make Good Treatment Decisions   Participate in your Treatment   Health Care Quality   Inside Healthcare  


Comments on this post
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Shoshanna Sofaer says
March 5, 2014 at 9:02 PM

What if physicians also asked patients, when prescribing a new medication, what they thought might be problems they would face in taking the drug as prescribed? This would be "letting the cat out of the bag" and make it OKAY for patients to express their concerns UP FRONT, when some of them, at least, might be solved.

Michael Millenson says
March 5, 2014 at 9:20 PM

Jessie, I know you live in NYC, but if you've seen the award-winning Target medication labels, you'd know what's possible -- and, it turns out, they do increase adherence, just like you predicted. http://www.ncbi.nlm.nih.gov/pubmed/19247719

Michael Millenson says
March 5, 2014 at 9:21 PM

Sorry: Target labels might increase adherence -- not firm evidence yet.

Dwight McNeill says
March 6, 2014 at 1:18 PM

Jessie, I thought your video on patient engagement was just perfect. Your statement that "It’s no longer the case that we can passively receive healthcare and assume that this will produce the best results" was elegant. So, there is a bit of a contradiction in this piece to expect docs, pharmacists, and others to clean up their act on medication compliance...first....before patients do their part. There is a real need for "workarounds" in areas where the medical system just does not get it. And this is one of them. Behavioral economics and technology approaches are helpful and do not necessarily have to rely on the doctor as a pivot. The goal has to be for patients to take their medications. And I am increasingly encouraged that people/patients have the capacity to learn/change better than their doctors in cases like this because, as you say in your video, "as individuals we have the biggest stake in our care."

George Patrin says
March 9, 2014 at 9:02 PM

This blog is spot on. When we, as the "healthcare system," point our finger at patients for being "non-compliant" we need to remind ourselves three fingers are pointing back at us and our responsibility to educate our patients (I call it "drain my brain" on them) accounting for cultural and educational limitations which may cause them to come up short with their "25% of the responsibility" to follow our advice. When in doubt, remember "Who's the patient!" But you missed a primary reason for our failure - we don't really know our patients given the incentive to work faster (generate RVUs), to not ask about difficulties all patients have (education needs time and we're not paid for that), medical conditions can affect the patient's ability to comply (an adult with ADD) where we need participation on the 'team' but 'hide behind HIPAA' so don't share medical information and responsibility with 'family' actually living with the patient. (You DO need to be a 'rocket scientist' to keep all the directions and rules straight!) Thanks again Jessie, for your advocacy and efforts to improve our (often) broken healthcare (non) system.

James Cooper says
March 14, 2014 at 3:06 PM

Sometimes I think CFAH is the Fox News for patient advocacy. Unbalanced and too much anger. We can agree that many patients at times do not follow advice about medications or other health-related behaviors. According to this post, doctors are the first to blame. I am one of the doctors.

Me, I blame behavioral scientists. I don't think behavioral scientists have helped health care much at all since they began. In fact, I think they misled us. They told us to persuade mothers that MMR vaccinations do not cause autism, and then mothers would have their children immunized. But it turns out that when mothers were persuaded, the intensity of their refusal to vaccinate their children increased. CFAH would probably blame docs for this, too. I blame behavioral scientists. They haven't helped us to get people to have a healthy diet, either, or to exercise more or, for some, to stop smoking. I would mirror CFAH by saying, don't behavioral scientists have classes on this in their schools? No? Aren't they tested on this in their CE certification? No?

Clinicians want people to take medications as advised and to have healthy behaviors. We listen to scientists and we try. I thought about CFAH's condemnation today as I prescribed for a patient. Here's how it went.

"Your blood pressure is still too high," I said. "I'm going to prescribe a new medicine for you, an ACE inhibitor. Take one each day. I need to tell you about possible side effects. Most people take this drug with no problems. Sometimes, it can increase your blood potassium. We'll monitor for that. It can also cause coughing and diarrhea and fatigue, and injure your kidneys. But those things are unusual. It's important for you to take it, because if we don't get your blood pressure lower, you'll continue to be at higher risk for stroke. Do you have any questions? [Shakes head "No."] OK. You still use the CVS pharmacy on Wisconsin? [Nods head yes, and I enter the prescription on the computer.] OK. It's all set. Any questions now?"

The patient responded: "What about that potassium? Is that dangerous?"

"Yes. It can be fatal. But we'll be monitoring for that," I replied

"What about those other things?" he asked with apparent apprehension.

"If any of them happen, let us know, and we'll decide what to do," I added.

The patient frowned, but left.

To enhance adherence, our nurse aides review the patient's medication list when they take the blood pressure, and ask about any questions. We often provide a list of medications at the end of the visits. We follow insurance formularies. I've tried "teach back" as a method of communication, but it seems condescending and paternalistic. I generally rely on redundancy for teaching.

My non-adherence rate is no better than anyone's. Tell me, Dr. Behavioral Science, what should I do differently? I am a practitioner. I don't make the knowledge; I just apply it to direct patient care. If it's a behavioral problem, should not the behavioral scientists be fixing it?

So far, this discussion has been superficial. One side says docs are the first to blame for non-adherence. The other side, a doc, says behavioral science should give us the tools and we will use them. But there are deeper issues. What is the responsibility of providers? My view is that providers should keep up with their science, make reasonable clinical decisions and share their thinking with all patients who are interested. Patients have the right and privilege to choose what they will do. Neither providers nor the government have the right to force people's behaviors. (The government has that right in some instances; docs never do.)

Sometimes, a patient's non-adherence is the best choice for that patient. Patient decision making is complex, and can involve self-image, past experience, value sets, financial concerns, and other factors. Maybe we could all acknowledge there are problems, and encourage more understanding and joint research.

Nora Miller says
April 9, 2014 at 5:58 AM

We are all flawed and fallible, doctors, patients, pharmacists, organizations, innocent bystanders. This clear and insightful post establishes that adherence is not simply a problem of difficult or inept patients, but instead is a complicated problem in a complex system that involves many flawed and fallible people with less than optimal information. Yes, patients play a role in the adherence problems--we've certainly heard plenty about that. I think the author is suggesting that the system has already gone a long way toward looking for ways to address their issues, and that there are other aspects that could also be examined. She is not saying okay, now let's blame someone else. She's saying this is a system, so let's treat it like one, and that means looking at how the *system* operates suboptimally to increase the likelihood of someone, anyone, making errors. In this *system*, the doctors prescribe the meds. So how can we adjust the *system* to improve the information they get, the skills they use to share it, and the choices they make in the process of prescribing? What changes will influence the quality of information pharmacists have and increase the time they have to communicate it to customers? What changes can we make to manufacturing procedures and practices to reduce overall error in the *system*? Blame serves no purpose in efforts to improve systems. It take deliberation, information, open-minded communication, and a willingness to pay for reliable improvements that reduce costs to help make things better. Let's do more of those things, together.