You all know how much we hate the term “compliant,” and especially its antonym “noncompliant”— suggesting a bunch of naughty, misbehaving patients who are simply too lazy or stubborn to follow orders. Ugh!
It’s been encouraging in the last few years to see many healthcare and pharma professionals realizing how un-PC the term “compliant” is, because it doesn’t reflect the least bit of empathy for just how difficult it is to perform some pretty unpleasant health tasks day in and day out, for the rest of our lives, often with frustrating results!
Also, “compliance” covers everything: eat right, exercise X hours per week, get your lab tests often, and test your sugar over and over in a perfect daily drumbeat of diabetes management. NOT.
Lately it seems the industry has broken off a bit of this, honing in on “medication adherence.” I see this term popping up all over these days.
Three of the big chain pharmacies have recently launched “adherence” programs specifically for diabetes:
* Express Scripts Inc. just unveiled a new program for contacting people who fail to take their prescription drugs — before they actually stop. They’re using advanced data analytics to “accurately predict up to a year in advance which patients are most at risk of falling off their physician-prescribed drug therapy” and then they intervene by sending reminders, and offering consultations with a pharmacist, lower co-pays, transition to home delivery of meds, and/or auto refills and renewal assistance.
* CVS/Caremark is doing something similar, offering “pharmacist-initiated phone calls, or face-to-face counseling with a pharmacist at a local CVS/Pharmacy,” and offering members “options and solutions to enable them to get the most out of their pharmacy benefit and identify opportunities for cost savings,” along with educational materials.
* Walgreens is testing a new “Optimal Wellness” program that offers face-to-face diabetes care coaching with pharmacists in their stores. “Through accessible community pharmacies, our program brings patients the tools they need to live healthier and more productive lives,” they claim.
I wonder, though, is adherence just another concept to flog patients with? Or is it possibly something parading as patient assistance that’s really just an excuse to push product? If you look closely — despite the claims to offer patient education — many of these new adherence programs appear suspiciously like campaigns to 1) simply bug people to keep refilling their prescriptions, and 2) self-servingly “expand the pharmacist’s role as a trusted provider of health care services” (a direct quote from the Walgreens press release).
Several problems here:
♣ Digging into people’s data to see who’s been taking their meds also brings up a bevy of privacy and ethical concerns, as noted a few days ago in the Wall St. Journal.
♣ Is the act of simply refilling prescriptions the right indicator?
Can you assume that just because patients are spending money to refill meds, that they’re consuming them regularly and correctly?
Well… there’s me for example, and that statin drug my endo insisted on. I filled the script all right, but later decided that I felt uncomfortable taking them, since my cholesterol was barely high, and there’s still a lot of controversy over the effects of long-term statin use. So the pills sat in my medicine cabinet for a few months, until we recently changed insurance providers again and the script was automatically refilled. Snap! Now I own TWO three-month supplies of a medication I do not take. I sure as heck don’t want anyone calling me to remind me I haven’t refilled in a while.
♣ I really wonder what the content and quality of the “patient education” portion from these pharmacies is? We PWDs know full well what variety exists in that arena.
♣ And what happens after patients leave the pharmacy? What keeps them motivated over the long haul? As my wonderful CDE Gary Scheiner says, “If people take their health seriously, they’ll take the meds – but motivation for each individual is all about finding something about (diabetes care) that’s important to YOU.”
“If I’m dealing with a teenager for example, I never talk about A1c or average blood glucose levels at all. They don’t care about that. I talk about sports performance, academics, social life, and maybe that acne they’ve got (because if their sugars are high, the skin gets dehydrated and they’ll have more skin problems). That’s the stuff they care about.”
I wonder, can institutional “adherence” programs possibly acknowledge the simple fact that people don’t care about medical stats – they care about their lives?
Some studies are starting to show that the combination of med reminders and patient education efforts can help crack the nut on behavior change.
But I’d like to put the question out to the real patients living “in the trenches”: what do you think would help you or other PWDs you know become more compliant, er… adherent? Or whatever you want to call it?
I’m still trying to figure out how to be more compliant/adherent with my regimen. I think the biggest thing is for us physicians to simply act like adults, educate about risks, remind (not preach and cram stuff down patient’s throats), and document the patient’s decisions, regardless of wether they decide to take meds, eat right, and exercise. I think the biggest problem is that out performance (as patients) is what’s used to judge the physician overall (“You only have 10% of your diabetics at an A1c of under 7 – we won’t reimburse you as well as this physician who has 45% of his diabetics under 7″).
My family has filled prescriptions at the same Walgreens for years, and I really like the pharmacists, but do not believe they have enough knowledge and understanding of Type 1 to serve as “coaches”, or anything more than minor consultants. When I was diagnosed two years ago, all seemed surprised that someone my age could actually be a new Type 1. One pharmacist commented that I don’t look diabetic, and the other added “In fact, you look like you’ve lost weight.” However, they have been very helpful in working with my insurance company. As far as compliance/adherence, I saw my dad die of complications of Type 1 in a time when knowledge and technology were not as advanced, and that so far has been my motivation to care for myself.
Love Gary Scheiner’s approach! Best way to motivate is to find what pulls us along and help with that, not to push us based on someone elses goals. Personally I don’t see the term adherence as much different from compliance, but I supposed there has to be some way to quickly note things in the chart. I’d personally rather have it said of me that “she’s living well with diabetes and all that it requires” or “patient could do better at integrating diabetes care and life activities”.
I really like your perspectives here, but as a fellow diabetic, adherence is a challenge for many reasons. In the end many patients may not take on the responsibilities they need too. Many of the programs I know about or participate in, focus on helping empower me to make the change myself. I find these reminders helpful especially in the middle of a busy workday. More importantly, with some text messaging programs I can provide data directly back to my doctor. This has helped me move my A1c’s from 9 to 6.5 in the last 6 months. Look forward to reading more of your blog in the future.
I think a lot of “non-compliance” or “non-adherent” issues arise because of medication costs. People wait to refill their medications because they can’t afford it, or they stretch a supply longer than it should be stretched because it is too much of a financial burden to refill it regularly. I think one of the biggest non-adherence issues PWDs (and others) face is the cost of their medications. Until that issue is addressed, no amount of education or interaction with a pharmacist is going to help with adherence.
Also don’t see how they can enough information. When I finally got my T1 dx (previously they said (T2), I stopped taking metformin and got harassing phone calls from my insurance company. When I went to fill the insulin scrip, the pharmacist insisted it was wrong and I should NOT go off metformin , not start insulin, and try a different T2 med. I explained to him over and over that I was actually T1, what T1 meant, to no avail. This same guy later also hassled me about buying ketone strips. He kept saying they were only for weight loss. Yes, this was a pharmacist.
There’s also the fact that we’re trying to deal with a 24-hour disease using business-hour resources. Not everyone can do mail order or get to a pharmacy during normal business hours.
I recently had my mail order pharmacy question the number of test strips I use per month. They called me (after having to verify my info several times and putting me on hold!!) to ask what my A1C was and could they help? I asked WHY they needed that info and got a lot of backpedaling about those who use more test strips being in poor control…WHAT!!!! You know cause my mail order pharmacy knows me and my Diabetes so well. HA! I got the increased number of test strips but I was burning up with anger over the nosey questions.
People without diabetes often ask me (adult-onset Type 1, pumping for 13 years, since diagnosis never an A1c over 7–someone who is living well in spite of T1) about Type 1s who struggle and have poor control and very difficult lives (who would be called noncompliant or nonadherent). I say that the technology that we presently have is not sufficient to maintain good control of Type 1 diabetes. I tell them that I am somewhat of a technogeek and highly motivated, and I can’t maintain perfect control and that I have “diabetes days from hell.” Even if a person is motivated, perfect control is not achievable with the present technology.
Kim and Lili’s experiences with their pharmacists denying that they could possibly have Type 1 as adults is exactly why we need LADA Awareness Week (I prefer “Adult-Onset Type 1 Diabetes Awareness Week”, but that is a tad cumbersome!).
Call me a skeptic, but the pharmacy chains stand to make money with greater compliance, errr, medication adherence, and their programs reflect this, but little else. The reality is that medication adherence is only a very tiny component of good glycemic control, but its the one the companies like CVS/Caremark, Walgreens, Medco, and Express Scripts. In fact, CVS/Caremark had a rather lengthy presentation about the impact to its bottom line by increasing drug adherence. But short of eliminating co-pays and other hassles involved, I don’t expect these programs to deliver much for company investors or for patients.
I am a pharmacist and a CDE, as well as the wife of a man with Type 1 diabetes for 26 years. I feel compelled to make a few points about this post related to noncompliance.
1) Pharmacists receive a minimum of 7 years of college training on medication action, use, and safety. We have more training on medications than any other profession, including physicians. Pharmacists are being recognized by both health care teams (health care home) and patients as experts in medication use.
2) Medication management programs have been developed because it has been shown in multiple studies that pharmacists working with PWDs improves health outcomes and decreases A1cs, lipids and BPs. The most studied group was in Asheville, NC, but this has also been shown in my state of Minnesota.
3) Nonadherence is a concern and does have costs, both financial and clinical. Patients who do not take their medications as prescribed cost the U.S. health care system an estimated $290 billion in avoidable medical spending every year.
As a pharmacist, my goal is to work with patients to help them find the best “fit” for their medications into their lives.
Amy, you spent a lot of time finding an endo and CDE to be part of your team and I think that you are missing out by not including a pharmacist on that team as well! Maybe if you had a pharmacist on your team she could address your concerns about the statin and make you feel confident talking with your endo before you filled those prescriptions. A favorite quote of mine is from former Surgeon General C. Everett Koop – “The most expensive medication is the one not taken correctly”.
Excellent article! I’m afraid we do need to remain vigilant as to the motives of pharmaceutical companies. Their (understandable) antagonism to alternative/complementary therapies reveals their anxiety that something other than drugs might work. As you say, it’s less about treating the patient and more about pushing the medication.
That said, of course, some medication is essential for certain people and it is important that doctors are willing to discuss this with the patient. I agree with you entirely about statins – for some people they may be necessary but for others there are more gentle ways of reducing cholesterol levels.
I’m a T1, diagnosed at 13, I’m 45 now. I became more adherent when I started getting some complications (retinopathy, protein in urine). I was “adherentish” — I still had some bad habits.
I found that I wasn’t motivated to take control until my motivation changed. Before, I would probably object to having a “nanny” and now I’d probably stop to chat about what I’m up to.
My early education was non-existent and I was pretty much not going to go out of my way to integrate this thing into my life. I knew the bare minimum and it showed. I was hypo unaware and I was having some personally terrifying lows. Once I realized I needed to get in front of this, I was 75% more adherent. I got “Using Insulin” and it changed my life. I taught myself carb counting and became born again. It took me a long time to take responsibility for management. The will to be adherent needs to come from within. That’s the hardest thing to do sometimes. I’m glad I did. My last A1C was 5.5. I finally felt like I was on the right side of the equation.
Melitta said exactly what I was going to say. I think this pharmacy-led “adherence” is either missing the mark entirely or focusing too much on one very small aspect of diabetes control (taking insulin or medications). Was there anyone with diabetes at the meeting when this idea was cooked up?
I felt compelled to reply to this topic. I find it offensive every time I observe the statement “noncompliant” in my medical chart, referring to my diagnosis of diabetes. It makes me feel as though I am simply being rebellious and ignorant about my medical condition, as well as a complete failure in managing it. This is not an accurate reflection of “me” and I am affended by this portrayal. My physician often looks at me as though I’m an idiot for not taking this seriously enough. I am judged by whatever my current A1C level is at that time. God forbid, I contract an infection, cause my physician automatically blames it on high blood sugars and my fault for not having better control. This is such a complicated disorder effected by so many variables at any given time, that to have, or expect constant control is not reality. Because it can so easily become overwhelming, I try to accomplish a few tasks at at time and not stress over everything all at once. A few words of encouragement from time to time when I do manage to conquer or overcome obstacles faced with diabetes would be so beneficial in with my attitude and motivation. I would be very encouraging to see in my medical records, and or hear the acknowledgments for what I have accomplished, such as incorporating exercise into my daily life, or maybe having lost a few pounds. Sure, we may be slacking in some areas of our treatment, but to classify us with such a broad statement is unfair and sometimes cruel.
@Melitta – I’ve been having “diabetes days from hell” myself for over a week now. And it’s not like I don’t take my meds – or that I’m not trying. Sheesh.
I am a Walgreens pharmacy and I am a diabetes educator. I am not a CDE yet, but I have received extensive training in diabetes education in addition to the 6 years of college necessary to obtain my Doctor of Pharmacy degree. I am quite offended that you use the term “self-servingly” in describing Walgreens efforts to promote diabetes education. The diabetes center in my store provides all services related to the diabetes clinic FREE to any patient who is interested…2 hours or more of diabetes education (including medication review and consultation with the MD), free glucose testing, free A1C testing, and free blood pressure checks. This year alone I have completed over 30 hours of diabetes related continuing education and flown across the country for a 3 day workshop in coaching diabetes patients through behavior change. Pharmacists can play a very valuable role in diabetes education and I am proud that Walgreens is stepping up to the plate to meet a need that other pharmacies have not foreseen.
I recently had an experience with a new medication the doctor prescribed for me. I called her office and was told my reactions were ‘minimal’ and to keep taking the medicine – which I did. Now….two weeks later I have stopped the medicine because of those same side effects. Oh……..and I have also suffered hearing loss from those side effects. Because I am deaf in one ear and have a moderate to severe loss in the remaining ear, I would have welcomed a pharmacist’s advice on possible side effects. The doctor still doesn’t believe I have a hearing loss in spite of an audiologist test that was done to confirm it. Don’t talk to me about adherence or compliance until you are ready to walk in my shoes 24/7.
I am a physician, not a Diabetes Educator but I have training in wellness promotion. I was trained in mental health and geriatrics where team work is the way of doing business – nurses, social worker, OT, PT, pharmacist, and patient in the room discussing and coming up with a plan that would work to get the person’s health back on track. I am also a “sandwich” generation providing healthcare support to my mother, daughter who has been homebound for years, disabled niece and many others. We have had over 25 hospitalizations over the last 2 years so I have come too see the world more and more from the “consumer” or patient side.
I agree with the objection to “compliance” – I have always found it offensive. But it is not always meant to be a put down-just the “traditional” word used. It comes from our long history of expecting the health professions, doctor, to be “right”, the paternalistic approach which many older people still want. Things have fortunately begun to change.
The current shift to “adherence” has actually come from two places.
1) case managers- allies to the patient in preparing for discharge from the hospital. It is meant to mean that the whole team including the patient has come up with a plan that the patient thinks would work for them – and “adhering” referred to being able to stick to the plan. It is supposed to be a “living plan” meaning that you try it and if it doesn’t work, it gets modified. Adherence is suppposed to mean you and your doctor look at the health issues, the possible actions, set priorities for waht to work on first and how to do it – and that becomes the “plan”.
2) It is part of the attempt to shift our whole healthcare system to a “patient-centered medical home” where the patient really is at the center and all planning starts with where the patient is and what they need.
From a wellness/health promotion or motivational perspective, that means if the priority for the patient is about a job or getting a babysitter or getting transportation – that is what is focused on. Then, the next step – if the patient doesn’t think they can do all 5 things that are needed, they pick the one they want to start with and how etc..Like Greg says, start where the person is and work from there.
_About tracking taking meds – We are in a new world. Clinics and doctors are being measured for how well they are doing getting patients to have care that is “high quality” – based on what is supposed to help the medical condition get better or be under control and make a person’s life better. The issue for physicians – is being held accountable for whether the patient exercises, eats wisely, stops smoking and takes their pills – which is checking refills! This whole quality measurement is being linked to the physician/clinic/hospitals payment. It’s called “value-based purchasing”.
The missing piece is that there has to be an open conversation with the doctor hearing and understanding the issues the patient is facing, the side effects, complicated schedules etc. and coming up with a plan and prescriptions that the patient can agree to try to take. This is going to require new learning for doctors and patients on how to talk and listen to each other and work together.
This is becoming an even more complicated issue and will only get bigger when “accountable care” goes in to effect. Doctors and clinics will be measured for costs and their quality scores.
Patients need to be sure the “quality measures” are the right ones for their condition – that they work to make our care high quality.
as for me I guess having the word “compliant” is way to ideal for mostly of the patients, It is just about maybe 10 out 100 patients would be able to follow all the rules, do’s and dont’s given by the physicians ,.. “adherence” may quiet be more effective and easy for them….