Patient Adherence: Identifying Barriers and Defining Solutions

On November 10, 2008, Novartis Pharmaceuticals Corporation (NPC) hosted the 9th Power of Partnering (POP) Conference. Representatives from 37 leading patient advocacy and professional organizations in the United States were invited to a 1.5-day roundtable conference to discuss one of the more serious public health issues in the United States: patient nonadherence to prescription medication.

The 37 people attending this invitation-only event represented a cross-section of patient advocacy and professional groups across a broad spectrum of disease areas (Table 1). Calling patient nonadherence “one of the most challenging and far-reaching global public health problems today,” the attendees noted that lack of adherence to a prescribed treatment regimen leads to poorer patient outcomes, including unnecessary disease progression, reduced quality of life, and even premature death.¹ Nonadherence also creates a significant societal burden, especially in terms of increasing healthcare costs from hospitalizations and invasive procedures to address complications that might have been prevented with continuous pharmacologic intervention.^2,3

Although a growing body of evidence has quantified the issue in various disease categories and patient populations, NPC held the roundtable discussion because, up until now, the collective perspective on this subject from organizations advocating on behalf of patients and professionals has not been evaluated. The session aimed to identify the leading barriers to patient adherence, to understand the patients’ point of view about what influences behavior around adherence, to discuss recent trends and innovations that could potentially improve adherence, and to identify solutions for overcoming some of these barriers.

CONFERENCE FORMAT AND KEY OUTCOMES

Adherence pertains to the patient’s behavior with respect to following medical advice, whether that is filling a prescription, taking medication as directed, or modifying certain health habits such as quitting smoking, following a specialized diet, or exercising regularly.^2,4

Before the POP Conference, participants were surveyed on their experiences and opinions regarding patient medication adherence and compliance. The 24-question survey assessed each organization’s specific concerns regarding the issue of adherence among physicians and patients. According to the survey, the top 3 physician barriers to patient adherence were unclear communications, lack of time, and a belief that adherence is the patient’s responsibility. The top patient barriers were found to be lack of understanding, denial of the severity of their illness, and low health literacy.

During the conference, the survey findings were presented to the attendees, along with an overview of the adherence literature, public health policies, and innovative solutions that already are being implemented. Following the presentations, the attendees broke out into workshops to discuss the various barriers and to work collaboratively to identify ways to overcome these obstacles. Three key solutions emerged from these workshop discussions.

Solution 1

Reducing multicultural barriers is vital to helping the patient population most in need of assistance—low-income patients, minorities, and immigrants, particularly the elderly within these populations. Multicultural groups make up an important proportion of the US population.⁵ Demographic changes expected over the coming decades will only magnify the importance of reducing and eliminating multicultural barriers. Although there is little research addressing adherence among diverse populations, organizations advocating on behalf of specific populations noted that barriers to adherence may include patient-related beliefs about medication, including a skeptical view toward prescription medication; cultural perceptions of healthcare providers, whether those be a deep-seated mistrust for physicians or an unwavering reverence for authority; education materials and outreach that are not culturally relevant; and other communications barriers, including language.

The participants agreed that to successfully promote adherence among patients, interventions must be delivered by a trusted source, be personalized to the patient’s situation, and target at-risk populations before patients stop taking their medications. Successfully promoting adherence among rising multicultural populations, therefore, depends on developing interventions that are culturally competent. Cultural competence means the ability to understand, communicate with, and effectively interact with people across cultures.

On an organizational and industry level, the attendees noted that educational initiatives intended to raise awareness of diseases or treatments must be linguistically appropriate from the beginning. For example, brochures and other materials intended for Spanish-speaking patients should be written from the onset in Spanish. Translating English-language materials into Spanish might result in important information getting lost in translation, potentially confusing or offending the patients receiving the message. Interventions that are both culturally competent and relevant to patients must be a critical component of any adherence platform, and may include efforts to help patients understand the prescribed management strategy as well as improve patient—provider communications on a cultural level. However, more research is needed to determine the types of tactical approaches that might address nonadherence among multicultural populations.

It is equally important that patients in the clinic or physician’s office be able to communicate their symptoms effectively as well as understand the management strategy that is being prescribed. Healthcare practices should offer staff members fluent in the patient’s language to break down language barriers.

Lastly, the attending organizations underscored the need to improve the perceptions of healthcare practitioners among certain multicultural populations. Patients need to be able to trust their healthcare provider and maintain their trust in the healthcare system. One of the workshops suggested training patients with a specific disease like diabetes to function as “lay health workers” to liaise with and support patients who have low health literacy after they are diagnosed. In this way, well-informed patients can serve as guides to other patients in their communities.

Solution 2

Improve health literacy and simplify terminology to help patients better comprehend the complex disease and treatment information they are receiving. Merely providing patients with more information will not automatically improve adherence rates. Patients and healthcare providers also must engage in more open dialogues around diagnosis and treatment. But it is widely acknowledged that the time physicians spend assessing a patient’s medical and personal history, performing a physical exam, and discussing the diagnosis and treatment strategy is not always adequate or ideal. Along with a lack of time, the Office of the US Surgeon General also estimates that 90 million people in the United States are either marginally or functionally illiterate, meaning they cannot read well enough to understand basic health information such as discharge instructions, consent forms, medication labels, patient education materials, and health surveys.⁶ Even many literate Americans can have difficulty understanding this web of medical information.

The US Department of Health and Human Services has identified health literacy as an important component of health communication and medical product safety. Healthy People 2010 defines health literacy as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.”⁷ Improving health literacy among patients, therefore, will invariably help them take ownership of their healthcare choices and outcomes.

During the workshop session, attendees suggested that healthcare organizations and pharmaceutical companies should begin developing alternate educational materials for patients aside from brochures and Web sites. Because many people absorb information through methods other than reading, engaging patients with video, graphics, animation, games, and even interactive media may make health information more memorable for them, thereby increasing their ability to understand and accept the physician’s diagnosis and treatment recommendation. Research has already demonstrated the impact these other modes of communication have on patients with low literacy skills. One participant cited a study in which women with low literacy levels understood illustrated materials about cervical cancer better than text materials.⁸

Another simple but effective solution noted during the discussion is preparing patients for their medical appointments by providing them and/or their family caregivers with lists of specific questions they can ask the physician on their initial and follow-up visits. For the healthcare practitioners, conference participants said that face-toface communications should include readily understandable terminology to help patients more easily comprehend their diagnosis and treatment regimen. If time is an issue, then practitioners might consider presenting their patients with several choices for gathering more information about their treatment options on their own time. By instructing a patient to read a brochure or watch a video, along with viewing information online and calling a local advocacy group, healthcare providers might see a more informed and engaged patient at the next visit.

Solution 3

Encourage collaboration among associations representing patients and healthcare practitioners to achieve patient adherence goals. A number of advocacy groups, medical societies, and other healthcare entities in a broad range of disease and medical specialties are tackling issues related to patient nonadherence. To date, however, little effort has been made to create synergies that allow the sharing of best practices and collective organizational resources to address adherence. By working together, the organizations generally agreed they could present a more unified and powerful message to healthcare policymakers at all levels of government and academia. Operating across practices also will allow organizations to share their successes and approaches that work, as well as to facilitate changes in medical and nursing school curriculums. Better educating future healthcare providers on effective patient—provider communications as well as on the comparative effectiveness and value of competing treatments and their expected outcomes is an important step in raising patient adherence levels.

The organizations in attendance also believed that they should band together to support more research not only to quantify the extent of nonadherence across disciplines but also to provide evidence-based data on the effectiveness of various modalities for improving adherence. Such data would provide the credible evidence needed to engage healthcare providers and policymakers and promote societal change.

MOVING FORWARD

During the POP Conference, the presenters and attendees representing key influential third-party organizations highlighted a number of barriers to patient adherence (Table 2). Adherence-related problems, including disease progression and complications as well as increased morbidity and mortality, are estimated to cost the US economy upward of $177 billion annually in both direct medical costs and indirect costs such as lost productivity.² By consensus, the attendees said that the medical and patient communities need to understand all the barriers to patient adherence (most particularly the issues related to multicultural barriers and patient literacy) to execute effective solutions that will address the problem and, ultimately, improve patient care.

Solutions are vital for all patients, because even those people who can reasonably comprehend the positive short-term and long-term impacts of proposed interventions, pharmaceuticals, diet, and exercise often don’t comply. Addressing the multitude of complex problems that cause nonadherence, however, will require a strategy that is comprehensive, spanning all major disease areas.

Despite the challenges, innovative solutions that bring the focus of healthcare back to the patient already are in use. But more widespread societal changes need to be realized to significantly overcome the barriers to adherence. The best approach is to remain optimistic and hopeful, serving—as one delegate noted—“as warriors for patients” by stressing the positives patients would gain by taking their medication as prescribed. Patients and healthcare providers should appreciate the fact that achieving adherence is a stepwise process that takes time and continual follow-up.