The Shifting Landscape of Health Care: Toward a Model of Health Care Empowerment

Abstract

In a rapidly changing world of health care information access and patients’ rights, there is limited conceptual infrastructure available to understand how people approach and engage in treatment of medical conditions. The construct of health care empowerment is defined as the process and state of being engaged, informed, collaborative, committed, and tolerant of uncertainty regarding health care. I present a model in which health care empowerment is influenced by an interplay of cultural, social, and environmental factors; personal resources; and intrapersonal factors. The model offers a framework to understand patient and provider roles in facilitating health care empowerment and presents opportunities for investigation into the role of health care empowerment in multiple outcomes across populations and settings, including inquiries into the sources and consequences of health disparities.

Navigating health care systems and treatment options has become increasingly complicated and demanding for patients facing health care challenges. The proliferation of online health information and the expanded use of electronic health records have vastly increased the volume of available health information and the speed at which it is communicated; however, the human capacity to digest, interpret, and act on such information in an efficient manner has not evolved as quickly. The result is a risk of disconnect from one's health care, which is particularly pronounced if one is limited in resources such as health insurance, and if one does not possess the skills or means to access and evaluate online health information. In essence, the exponential progress made to date in the pursuit of electronic health platforms has the potential to further marginalize those populations who have traditionally been on the wrong side of health disparities. Persons from communities of low socioeconomic status with lower education and literacy are often disproportionately represented by racial and ethnic minorities. Individuals who will most likely benefit from the advances in health care technologies are those who have always garnered the greatest advantage, while leaving the rest behind.

This essay seeks to introduce the concept of health care empowerment and propose a model whereby health care empowerment is determined by a complex interplay of psychosocial and environmental factors. The model was designed to organize previously disconnected lines of research and to direct them toward the new construct of health care empowerment. The overarching goal of this conceptualization is to stimulate research and clinical awareness of factors that can enable or inhibit the optimization of treatment outcomes across populations and medical conditions.

THE CONCEPT OF HEALTH CARE EMPOWERMENT

The general concept of empowerment is not new and has been referenced in a wide range of contexts and disciplines, including psychology, sociology, political science, economics, nursing, and social work.^1–3 Although numerous efforts have been made to use empowerment as a framework for research, intervention, and social action, clear conceptualizations are lacking. A consistent definition of empowerment is not evident in the literature,¹ but attempts to define it often refer to empowerment as the opposite of powerlessness.³ Among the more comprehensive and widely cited definitions is that proposed by Rappaport in which empowerment is defined as “a mechanism by which people, organizations, and communities gain mastery over their affairs.”^4(p122) Although this definition encompasses the general notions of empowerment, there is much work to be done to operationalize the construct and apply it to specific situations and problems.

Establishment of a unified theory of empowerment has fallen victim to this lack of a specific and agreed-upon definition of the construct.² In a review of 55 articles related to empowerment, Aujoulat et al. were unable to distill a unified, well-articulated theory of empowerment in health care.¹ However, their analysis did support several guiding principles that informed the development of the proposed model of health care empowerment.^1,5,6 First is the idea that the objectives of empowerment-based interventions are not disease specific but rather rely on the development or edification of general psychosocial skills. The second principle is that empowering methods are patient-centered and involve experiential learning. Finally, Aujoulat et al. propose a central and reciprocal role of patient–provider relationships in determining empowerment.

Decades of theoretical work in health behavior and outcomes research has delineated a multitude of influential psychological, social, and structural factors that can provide guidance to the proposed construct of health care empowerment.^7–12 However, what is missing from the literature is a cohesive construct that encompasses the human capacity to actively engage in health care in a manner that is maximally productive. A health care empowerment framework would enable organization, investigation, and intervention upon factors that contribute to optimal health outcomes. From a review of the literature and drawing upon clinical experience, the notion of health care empowerment can be described as the process and state of participation in health care that is characterized as (1) engaged, (2) informed, (3) collaborative, (4) committed, and (5) tolerant of uncertainty.

Engaged

Engagement in health care has been identified as an important patient factor related to optimization of health outcomes.^13–16 However, the construct has been poorly defined, and conceptualizations have ranged from the minimalist retention in care to a more pronounced notion of active participation in treatment decision-making. In the proposed construction of health care empowerment, the concept of engagement in care describes active participation in health care, including accessing appropriate care, attending and preparing for appointments, and using additional available resources to maintain a high level of involvement in care. These additional resources may include the use of e-mail, phone consultation, and online portals for accessing care and health-related information.

Informed

Information is a necessary but alone insufficient ingredient in behavior change theories.^17–19 The importance of patients being adequately informed about their health and treatment options is a fundamental tenet of modern health care. An empowered patient understands his or her illness or condition, is aware of treatment options and their relative risks and benefits, and has a good understanding of the health care system, including benefits, available resources, and health care consumer rights. From the perspective of the proposed model of health care empowerment, for patients to be truly empowered, they must be well informed.

Collaborative

The importance of patient involvement in clinical decision-making has long been established,^20,21 with the assumption that greater patient participation leads to higher-quality informed consent, greater satisfaction, and better adherence to care.^20,22 Most studies investigating this topic conclude that the majority of patients prefer a participatory role in their medical treatment,²² although there is evidence that this preference is lower among older patients^23,24 and those with more advanced or serious disease.²⁵ In a study with 1027 HIV-positive patients, Beach et al. found that 13% of patients preferred to make all decisions themselves, 63% preferred sharing decision-making with health care providers, and 23% preferred that the provider make all decisions.²⁶ Patients who preferred shared decision-making were more likely to adhere to treatment than were those who preferred that the doctor make the decisions. The patients who preferred shared decision-making were more likely to be on appropriate treatment regimens than were those who preferred sole decision-making authority without their providers.

In another study, Kremer et al. reported that there was decisional conflict, or distress over decision-making processes, when patients believed that their preferences for shared decision-making were not met by their providers.²⁷ Taken together, these findings support the notion that shared decision-making is valued by the majority of patients engaged in medical care. However, these findings also indicate that a lack of concordance with the provider about the level of shared decision-making can result in conflict and poor adherence to care, which may be particularly pronounced in situations during which the patient does not acknowledge or validate the provider's expertise and the resulting treatment recommendations offered.

Informed and engaged patients may not be perceived as ideal by providers and insurers unless the patients approach their care with a collaborative stance. Successfully collaborative patients perceive a partnership with their providers and therefore seek and participate in shared decision-making about their care. To achieve this balance, they practice assertive communication and active listening, and have a reasonable level of trust in their providers and the health care system. Further, they communicate when there are issues with care or their relationship with providers, and as a result may believe that their providers know them as a person and are in alliance with them. With more widespread use of electronic communication strategies, there is greater opportunity for communication and collaboration between patient and provider.^28–30 Such a collaborative posture can facilitate greater adherence to treatment plans and encourage appropriate self-management and preventive care.

Committed

In the proposed framing of health care empowerment, commitment to one's health and treatment is central. It is possible to be engaged in care but not committed to a treatment plan, which may result in unfilled prescriptions for medications, disregarded tests and procedures, and poor health outcomes. As conceptualized in health care empowerment, commitment enables engagement and collaboration with providers and facilitates adherence to collaboratively derived treatment plans. Such commitment may also buffer against lapses in motivation following treatment setbacks or unforeseen disease progression. Consistent with the research on the benefits of appropriate goal disengagement,^31,32 this level of commitment must allow flexibility if treatment does not result in desired outcomes. Consequently, more realistic goals or expectations can be set or the treatment approach can be reconsidered to achieve more favorable outcomes. Alternately, high commitment to health care may conflict with commitment to a specific treatment plan proposed by a provider. In this context, the result may be tension between the patient and provider, in which case the patient may seek to advocate for additional resources and options, thus redefining available care.

Although treatment motivation and commitment have been explored in the context of treatment of alcohol and drug abuse, exercise and dieting, and psychotherapy,^33,34 the concept has not been fully articulated in the context of treatment of medical illnesses. Commitment can be conceptually contextualized within behavior change models such as the transtheoretical model (stages of change), in which commitment to changing unhealthy behaviors is highest in the preparation and action stages.³⁵ How commitment and motivation function in efforts to fully engage and participate in medical care has not been explored in as much depth. In the proposed framework, level of commitment is reciprocally determined by how informed, engaged, collaborative, and tolerant of uncertainty the patient is.

Tolerant of Uncertainty

My work in providing clinical services and developing research intervention protocols for patients with HIV/AIDS, cancer, cardiovascular disease, and spinal cord injury has underscored the important function of the human capacity to withstand uncertainty about the future. One of the most challenging aspects of coping with illness is the unpredictable nature of many conditions and the uncertainty of treatment outcomes. Consider the patient who is diagnosed with stage 3 breast cancer and is told that there is a 50% to 70% 5-year survival rate with aggressive short-term treatment, or the patient with HIV who is told that she may approach normal life expectancy with appropriate life-long treatment. The need to manage uncertainty has been noted as an important task for those coping with such unpredictable prognoses,^36,37 and the degree to which one can assimilate uncertainty into schemas or representations about one's health is conceptually associated with more adaptive adjustment to a serious diagnosis.^38–40 The balancing of emotional needs and a rational approach to decision-making based on probabilities and relative risks can be a monumental task when one is making treatment decisions. The empowered patient achieves a balance by tolerating this uncertainty and proceeding with engaged, informed, and committed treatment planning. Perhaps best captured by Paulo Freire, empowered patients accomplish this balance of assertiveness and tolerance by being “patiently impatient”⁴¹ in their engagement with health care systems, providers, information, and decision-making.

A MODEL OF HEALTH CARE EMPOWERMENT

There is a rich history of research and theory that stimulates speculation about how aspects of the proposed multifaceted construct of health care empowerment may be associated with other factors. In the proposed model (Figure 1), these variables are organized into the categories of cultural, social, and environmental factors; personal resources; and intrapersonal factors.

FIGURE 1.

Model of interrelated factors that are hypothesized to relate to health care empowerment.

Cultural, Social, and Environmental Factors

Perhaps the widest category of factors hypothesized to influence health care empowerment encompasses the context in which the individual lives. These include the socioeconomic status of the person, which is a critical anchor that often dictates available resources (such as stable housing) and may limit or enable the development or maintenance of health care empowerment. Cultural background, gender norms, and generational factors are important hypothetical determinants of health care empowerment. In some cultures, it is inappropriate to question the authority of a health care provider. Women in any culture may be perceived as abrasive or aggressive if they attempt to exert an active, collaborative role in their health care. Older persons may also be less inclined to challenge a provider's plan, lest they are seen as disrespectful. Societal and internalized forces of stigma, racism, sexism, or homophobia may interfere with an individual's level of empowerment in his or her health care.

Other individual styles that may be innate, such as personality or disposition, or learned through negative life experiences, such as trauma, may inhibit the development of health care empowerment. These are largely stable elements and exist as exogenous factors in the model. Finally, the background, training, culture, expectations, and pressures of the provider must be considered, as the provider is directly positioned to facilitate or impede the development of health care empowerment among patients. Such background extends to the providers’ early experience with health care, the culture of their training programs, and their resulting assumptions and stances on shared decision-making, admitting mistakes, and lack of knowledge.

Personal Resources

The personal resources that are hypothesized to be associated with health care empowerment include social support^42–45 and skills such as problem solving,^9,46–49 assertive communication, and constructive listening skills.⁵⁰ Other practical prerequisite resources are insurance and financial stability, access to adequate health care, and health literacy. Active alcohol and drug use limit the availability and use of resources that may facilitate health care empowerment. Finally, there is a rich body of research that denotes the importance of an individual's implicit theories, representations, and expectancies about health, illness, and treatment.^{38,40,51–54} It is hypothesized that these personal resources or deficits influence health care empowerment both directly and indirectly through their mediating effects on intrapersonal factors, as described in the next section.

Intrapersonal Factors

The effect of negative affect and depression^55–58 and more recently positive affect^59–61 on clinical outcomes has been well documented in multiple disease states. These effects are hypothesized to be direct through several psychoneurophysiological pathways and indirectly through their effect on treatment seeking, health care utilization, treatment adherence, and health-promoting behaviors. In the proposed model, such factors, including positive and negative affect, depression, anxiety, and the associated aspects of meaning and hope have direct effects on the development and maintenance of health care empowerment. In addition, they influence the availability and use of personal resources as described previously, resulting in a reciprocal relationship in the model.

CHALLENGES AND OPPORTUNITIES WITH THE MODEL

There are a number of issues to be addressed with the current conceptualization of health care empowerment. First, empirical evidence must be collected to measure and test the utility of such a model. Tying the concept of health care empowerment to patient-related behaviors such as retention in care and adherence to treatment regimens, and to clinical outcomes such as disease progression, morbidity, and mortality is a critical next step. These outcomes should be expanded to include patient quality of life, vocational productivity, and health care costs associated with varying levels of health care empowerment. For this to be accomplished there need to be reliable and valid measures of the concept of health care empowerment, and these measures must be rigorously tested for their psychometric properties.

Empowerment Process, State, and Exchange of Power

As currently framed, health care empowerment is both a process and a state. The components and descriptors proposed for the construct of health care empowerment are largely aspirational rather than concrete achievable milestones. For example, being informed about one's condition is not a static accomplishment that is achieved with finality. Rather, it requires an ongoing effort to keep up with and synthesize information about one's condition and treatment options. Electronic media such as online literature searches and discussion boards centered on specific illnesses can facilitate this information gathering in a manner that was not possible in the past. Further, the same clinical outcomes that may be influenced by health care empowerment likely feed back through the model, such that outcomes may directly influence beliefs about treatment and levels of hope and optimism about subsequent treatment success. Similarly, the very definition of being tolerant of uncertainty denotes a dynamic reaction and adjustment to changes in the course of illness and treatment such that continuing regulation of one's expectations and reactions is required.

Another important conceptual point is that there is a vital interaction between the role of the patient and the provider in the process and state of health care empowerment. There is a wide range of factors that influence provider behavior in medical encounters.⁶² To move toward greater health care empowerment, the provider must acknowledge, foster, and respect the patient's autonomy and value to the collaborative process while maintaining a role as an expert. Likewise, patients must be able to accurately gauge the credibility and expertise of their providers, knowing when to trust and when to challenge their health care partners or seek outside consultation. From this perspective, health care empowerment may lead to increases in efficiency, access, and use of available care or to a challenge, extension, and redefinition of available health care. Such empowerment is potentially associated with conflict and tension between the patient and other parties of health care systems, including providers, insurers, pharmaceutical industries, and policymakers. Power does not often change hands without resistance, and, as such, an empowered patient may be viewed as contrary, difficult, or even disruptive by some stakeholders in a health care system. As noted earlier, the provider's background, training, and culture interact with patient factors, treatment options, and structural factors to influence this relationship and the resulting nurture or hindrance of empowerment among patients.

Empowerment and Context

As previously noted, there are large cultural variations in the role that one is encouraged or expected to play in one's own health care. These differences can occur along the often overlapping dimensions of gender, nationality, race, ethnicity, religion, socioeconomic status, and availability of resources such as housing, food, and health care. These cultural factors influence health outcomes through multiple direct and indirect pathways and are likely important drivers in health disparities for conditions such as cardiovascular disease and diabetes.⁶³ The proposed model of health care empowerment may provide a useful framework for disentangling the effects of these factors in the development and maintenance of disease disparities. For example, how are the factors that facilitate or impede health care empowerment (e.g., education, facility with assertive communication) differentially distributed across populations? Which of these factors are amenable to change on individual, structural, or societal levels? In considering the role of health care empowerment in establishing, maintaining, and deepening health disparities, it is important to consider the effects of differential access and preferences for electronic resources among marginalized populations.^64–67 For providers to maximally engage in supporting their patients’ health care empowerment, there should be an appreciation of patient preferences (e.g., Web browsing, e-mail, text messaging) and barriers that may impede empowerment.

The degree to which a patient can be empowered in his or her treatment likely also varies across disease conditions. The choices and prognoses for a patient with lymphoma are different from those for a patient with diabetes. Therefore, the form of patient–provider collaboration and need for tolerance of uncertainty may vary across condition and across levels of illness severity.

It is important to consider how the concept of health care empowerment fits in with the ongoing climate of health care reform, health care costs, informed consent and privacy, consumerism, and patients’ rights. There are estimates of hundreds of billions of dollars in unnecessary heath care costs each year in the United States that arguably do not directly translate to improved patient outcomes.^68–70 Contributing to this growing expense are patients’ demands for expensive and possibly unwarranted tests, referrals, or medications. Political messaging and direct marketing to consumers by pharmaceutical companies have increased over the past decade; patients may learn about certain medications through direct media campaigns or may read about a treatment option through an online discussion group. However, the patient may not understand the clinical rationale underlying certain treatment decisions and the provider, because of time constraints, may be unable to fully explain whether the course of action is indicated. Providers may perceive increased risk of malpractice suits if they do not acquiesce to the patient who has learned about these options. The result is that a series of unnecessary expenses are accrued to satisfy a partially informed patient. With the pressures of malpractice lawsuits and limited time to spend per patient, providers may find themselves preferring the passive, compliant patient over the informed, assertive one.

Some of these issues fit within the assumptions regarding patient empowerment identified by Harris and Veinot.⁷¹ These include the assumptions that patients desire to be in control of their health care, it is good for them to have choice and control, providers support such efforts to gain control, the provision of information empowers patients, and empowered patients will take better control of their health. The proposed model of health care empowerment allows the deliberate and comprehensive investigation of these assumptions as well as other questions about the role of empowerment in health care outcomes.

CONCLUSIONS

In spite of a proliferation in the use of empowerment conceptualizations in efforts to explain health risks and outcomes, there is a lack of clear definition and operationalization of the construct of health care empowerment. Based on the available literature and clinical experience, the proposed model defines the empowered patient as one who is engaged, informed, collaborative, committed, and tolerant of uncertainty. The proposed model of health care empowerment designates a dynamic interplay of cultural, social, and environmental factors; personal resources; and intrapersonal factors that interact to influence the development and maintenance of health care empowerment. Future efforts are warranted to further refine and measure the construct and to investigate how the process and state of health care empowerment influence health outcomes across cultures, illnesses, and populations.