Communication: the missing piece in the adherence puzzle

In our cardiovascular disease themed month, founder Mellanie True Hills shares 10 insights about how better communication can improve adherence for atrial fibrillation and cardiac patients – and can really help all patients.

For patients, medication adherence may be a matter of life and death. Patients who don’t follow healthcare provider recommendations frustrate doctors and sabotage their own treatment. I have seen the issue of adherence from doctors’ and patients’ viewpoints and I firmly believe the missing piece in the adherence puzzle is communication.

While participating in medical conferences, I have heard how doctors struggle to get patients to stick to treatment plans. Adherence is a particularly vexing issue for pharmaceutical companies, too. Because patients don’t know why they are taking medications, they may take the medication incorrectly or discontinue the regimen. Along with not treating the ailment, this non-adherence puts patients at risk for potentially costly adverse events.

Through online forums and personally talking with thousands of atrial fibrillation patients, I have learned about the issues that keep patients from following medication routines. As someone who has successfully dealt with afib, I have firsthand experience with the issue, too.

Atrial fibrillation patients have told me they don’t comprehend medical jargon; may not understand the rationale behind using a specific medication; had questions or opinions dismissed by doctors; and didn’t accurately understand healthcare professionals’ instructions. What do all these reasons for non-adherence have in common? Communication. Or, more correctly, miscommunication.

Such miscommunication may begin with a lack of understanding about the seriousness and prevalence of the condition. As the most common heartbeat irregularity, atrial fibrillation (often called “afib”) is an irregular, and sometimes rapid, heartbeat that leads to a quivering of the upper chambers of the heart, the atria. Atrial fibrillation is a malfunction in the heart’s electrical system. According to the Action for Stroke Prevention Coalition, afib affects more than 23 million people in Europe, China, and the United States alone.

Also, healthcare professionals may not fully understand the condition’s impact on patients. Many healthcare providers may significantly underestimate the seriousness of afib and the affect that some medications may have on patients’ lives. The truth is that afib can be quite risky and potentially life threatening. Afib increases stroke risk because blood pools in the atria, creating clots. Afib can overwork the heart and lead to heart failure, too. This is why adherence among afib patients is so critical.

“Because patients don’t know why they are taking medications, they may take the medication incorrectly or discontinue the regimen.”

Whether it’s afib or other conditions, adherence saves money. According to a study published in The American Journal of Managed Care, prescription drug coverage improvements to Medicare (universal coverage for U.S. seniors) yielded improved adherence that saved the program $2.6 billion, and further improved adherence could save another $1.9 billion annually.

What doctors can learn about the connection between communication and adherence among afib patients may be useful for all patients. Awareness of these opportunities to improve communication, and thus adherence, is relevant for pharmaceutical company decision-makers as well. At several medical conferences, I have shared with healthcare professionals the following 10 suggestions for improving communication with patients:

1. Cultivate respect. When healthcare providers build a relationship based on mutual respect and trust, patients will more likely follow recommendations. Respecting patients can be as simple as shaking the patients’ hands and directly addressing patients, instead of talking down to a clipboard or into a computer monitor.

2. Respond promptly. Responding to questions within a day (or so) shows that healthcare providers are responsive and respectful of patients’ concerns. Some afib patients have had to wait days or weeks for answers about medication questions, or even refills. From the perspective of adherence, if patients are unsure about medications or side effects and cannot get answers, they may simply not take their medications – and not tell anyone.

3. Eliminate jargon. Patients aren’t ignorant. But medical acronyms, abbreviations, and terminology may need explaining. Think of patients as intelligent people who speak a different language. When healthcare providers and pharmaceutical companies take the time to explain terminology, patients’ understanding and willingness to follow recommendations increases. In addition to reducing medical jargon, physicians may need to slow down their speech. Afib and other cardiac patients are often on beta blockers, which may cause brain fog, reducing their ability to comprehend or remember directions.

4. Encourage interaction. Healthcare providers can ask questions to confirm that patients understand directions. When patients have questions, getting answers, instead of a simple yes or no, boosts the chances patients will be more informed and invested in their treatment. Patients with complex chronic conditions need more than just two or three minutes of healthcare provider time. Also, seeking patient input and making treatment decisions together ensures that patients are invested in the decision.

5. Empathize. Afib can dramatically affect patients’ lives. Out of the blue, the irregular heartbeat of afib can cause sufferers to feel lightheaded, and sometimes afib medications leave patients zapped of energy. The condition can dramatically affect patients’ everyday lives. When doctors empathize with patients, they build trust that leads to improved adherence.

6. Stress seriousness. Some healthcare providers may tell afib patients that their condition isn’t serious – and worse that “afib won’t kill you.” This is simply not true. Those with afib have a five-fold increased chance of stroke, which can be deadly or debilitating. For many afib patients, anticoagulants are prescribed to reduce the risk of stroke, but many may not fully understand why they are taking the medication, and may stop taking the drug or not take it correctly.

“Atrial fibrillation patients have told me they don’t comprehend medical jargon…”

7. Make small talk. Talking about patients’ lives may yield some clues about reasons for non-adherence. Sometimes patient lifestyles can influence adherence and treatment results. One example: A vegetarian afib patient who’s on warfarin may have a diet high in vitamin K, making the International Normalized Ratio difficult to manage, thus mimicking non-adherence. When a doctor takes lifestyle into consideration, another treatment may be recommended instead of warfarin.

8. Create a healthcare team. Cooperation among healthcare providers helps ensure the best treatment for patients and eliminates conflicting prescriptions and directions. If atrial fibrillation isn’t a regular part of a practice, a referral to a specialist may provide patients with treatment options unfamiliar to general practitioners.

9. Clue into different types of communication. Women communicate differently from men. Sticking to a list of facts may work well with men, but some women may rely on emotion to communicate. This means healthcare providers may need to listen more carefully to women to determine symptoms and side effects.

10. Support more education. Healthcare providers and pharmaceutical companies can help promote adherence by supporting education in conjunction with patient organizations. The need to provide education applies to anyone communicating with patients about their condition and medications. These efforts can include educating patients about their disease and treatment options, as well as how to communicate with healthcare providers.

Hopefully, you can see how communication is the missing piece of the adherence puzzle. And if you, too, are concerned about what to do about the adherence problem, let’s discuss what we can do to solve it together.

Figure 1: Another way healthcare providers can promote communication is to urge patients to seek information and support through online forums.

About the author:

As the founder of, the No. 1 most-visited arrhythmia site in the world, Mellanie True Hills speaks about afib, adherence, and the patient’s perspective at medical conferences around the globe. She also collaborated with the Discovery Channel on a documentary about afib and afib-related strokes. An afib patient herself, Hills created as a way for patients to connect and support each other. Hills also writes regularly for medical publications.

What do you think is the most important factor in patient adherence?