How Engaged Are Consumers in Their Health and Health Care, and Why Does It Matter

HSC Research Brief No. 8

October 2008

Judith H. Hibbard, Peter J. Cunningham

Patient activation describes an individual's capacity to manage their own health and navigate the health care system. Activating and engaging consumers has emerged as a top priority for employers, health plans, and policy makers alike. The degree of patient activation varies widely across the U.S. population, with fewer than half of American adults reaching the highest activation level, based on new research from the Center for Studying Health System Change (HSC) (see Figure 1). Activation levels are particularly low among individuals with lower incomes, less formal education, Medicaid beneficiaries, and those who rate their own health as poor. Greater levels of activation are linked to substantially lower rates of unmet medical needs and stronger support from health care providers for chronic condition self-management.

Consumers Key to Health Care Reform Efforts

A growing consensus exists that activating and engaging consumers is a critical ingredient of health care reform in the United States. The health care decisions made by individual consumers and the everyday management of their own well-being can have profound effects on health care utilization, expenditures, and clinical outcomes. Although deep disagreements persist between proponents of a strong governmental role in health care reform and those who favor primarily private-sector solutions, most reformers recognize that meaningful gains in quality, cost control, and reduction of low-value care cannot be achieved without better-informed and more engaged consumers and patients. Payment reform and structural changes in care delivery address only one part of the equation. The other essential element is empowering consumers and patients to become more knowledgeable decision-makers and proactive managers of their health.

From a policy standpoint, this represents a formidable challenge, given the limited evidence base and the scarcity of proven strategies to accomplish this goal. An important starting point is understanding what activation and engagement truly mean and gauging the current extent of activation across the U.S. population. This Research Brief explores patient activation, how it differs across key socioeconomic characteristics, and how activation relates to other dimensions of patients' experiences within the health care system.

Measuring Patient Activation

Activation refers to an individual's ability and willingness to assume the role of managing their health and health care. The Patient Activation Measure (PAM) was created to evaluate a person's knowledge, skills, and confidence when it comes to health management. The PAM is composed of a 13-item scale that asks individuals about their beliefs, knowledge, and confidence regarding a broad range of health-related behaviors (see Appendix). Based on their responses to these 13 items, each individual receives an "activation score."

The PAM has demonstrated validity as a measure of activation. For instance, individuals classified as highly activated according to the measure are more likely to pursue preventive care, including health screenings and immunizations, and to engage in other health-beneficial behaviors. These behaviors include maintaining sound dietary and exercise habits; self-management practices such as tracking their condition and following treatment protocols; and health information-seeking activities like posing questions during medical visits and utilizing quality metrics to choose a provider.

Crucially, research demonstrates that activation can be modified over time. One study found that increases in activation over a six-month window were followed by measurable improvements in multiple health-related behaviors. A separate study revealed that consumers who receive support for proactive health management from their care team, coworkers and supervisors, and friends and family members tend to demonstrate higher activation and engage in healthier behaviors and choices.

Activation Levels in the U.S. Population

Earlier research utilizing the PAM relied on relatively small samples or specific groups, such as health plan members, Medicaid enrollees in selected local areas, and older adults living with chronic conditions. HSC's 2007 Health Tracking Household Survey represents the first large, nationally representative survey to incorporate the PAM for assessing activation levels across the U.S. population (see Data Source).

Research on patient activation indicates that individuals progress through distinct phases or levels on the path to becoming effective self-managers. These levels also serve as useful frameworks for designing interventions that help people strengthen their self-management abilities. Four levels of activation, determined by each individual's overall activation score, have been established. At the first and lowest level, individuals tend to be passive and may lack the confidence needed to play an active role in their own health. At the second level, people may be deficient in the foundational knowledge and confidence required to manage their health effectively. At the third level, individuals are beginning to take action but may still lack the confidence and skill necessary to sustain all required behaviors. At the fourth level, people have adopted many health-supporting behaviors but may find it difficult to maintain them when confronted with life stressors.

Fewer than half of all American adults (41.4%) fall into the highest activation level, according to results from HSC's 2007 Health Tracking Household Survey. Even at this top level, individuals still face challenges in sustaining healthy behaviors but generally possess the skills and confidence to approach health management proactively. Conversely, a relatively small proportion of adults (21%) are at the lowest activation levels (Levels 1 and 2), where fundamental skills and knowledge are deficient.

Activation Levels Vary by Population and Health Status Characteristics

There is substantial variation in activation levels across different segments of the U.S. population. Younger individuals, those with more education, and those with higher incomes tend to exhibit greater activation (see Table 1). Likewise, people with private health insurance generally display higher activation than those covered by Medicaid or those with Medicare only. Racial and ethnic differences in activation are also evident, with Hispanics showing notably lower activation levels relative to other groups.

Most of the observed differences in activation by education, race/ethnicity, age, and insurance coverage persist after adjusting for other characteristics. The notable exception is that income-based differences narrow substantially after accounting for education, indicating that much of the income gap in activation is attributable to differences in educational attainment that correlate with income.

Activation also differs according to the type and number of chronic conditions, as well as other health status indicators. Overall, individuals with chronic conditions are more likely to be at lower activation levels -- approximately 26% at Level 1 or 2 -- compared with individuals without any chronic conditions, of whom roughly 18% are at Level 1 or 2 (findings not shown).

However, among those living with chronic conditions, there are notable differences by specific condition and other health characteristics. For instance, people with depression tend to be the least activated, while those with cancer tend to score higher on activation (see Table 2). Individuals with multiple chronic conditions, those who describe their health as fair or poor, and those who are obese demonstrate lower activation compared with people who have a single condition or better health indicators.

Notably, the adjusted activation scores reveal that after accounting for differences in health status, obesity, and other characteristics, individuals with multiple chronic conditions actually tend to have higher activation scores than those with only a single chronic condition. All else being equal, managing multiple conditions may require greater self-management and more diligent monitoring of one's own health. Furthermore, health care providers may take a more proactive approach to teaching self-management skills to patients juggling multiple conditions.

To a certain degree, activation reflects the extent to which a person feels "in charge" of their own health. Individuals with greater resources in the form of education and income score higher on the activation measure, while those who have experienced repeated setbacks in managing their health -- such as people who are obese or who smoke -- score lower.

It is important to acknowledge that discerning the direction of causality in these observed relationships is difficult since the data were collected at a single point in time. Longitudinal data would be necessary to establish whether poor health status drives lower activation, or whether low activation and passivity contribute to worsening health. The causality likely runs in both directions, although low activation stemming from poor health may create a vicious cycle that prevents behaviors capable of improving health outcomes.

Moreover, while statistically significant associations exist between demographic and health status characteristics and activation levels, considerable variation in activation remains within each category of education, income, and health status. For example, although there is a strong correlation between education level and activation, 15 percent of college graduates are in the lowest two activation levels, while 23 percent of those with less than a high school education reach the highest level of activation. This indicates that lower educational attainment does not necessarily preclude higher activation, and that knowing a population's socioeconomic profile alone is insufficient to predict their activation level.

Activation Levels and Health Care System Experiences

Ultimately, the value of more highly activated patients lies in the expectation that it leads to superior health outcomes and health practices. For example, earlier research has demonstrated that higher activation levels correlate with greater engagement in preventive health behaviors and preventive care, as well as enhanced self-management of health conditions. One component of being more activated is actively seeking and using pertinent health information. For instance, those who are more activated are more likely to report reading about potential side effects when they receive a new prescription medication. Ninety-four percent of those at the highest activation level read about possible side effects, compared with 74 percent of the least activated (findings not shown).

Essential to positive health outcomes is the capacity to obtain needed health care services. While health policy frequently emphasizes financial and insurance coverage barriers to accessing necessary medical care, it is likely that more highly activated patients are better equipped to navigate a highly complex and often bewildering health care system. For example, individuals with chronic conditions who are at lower activation levels are substantially more likely to report unmet medical needs, delayed care, and unmet prescription drug needs (see Table 3). Less activated individuals are also somewhat less likely to have an established usual source of care. These differences persist even after controlling for socioeconomic and health status variables, and likely reflect the more passive orientation that people at lower activation levels typically adopt in managing their health. These findings may also suggest that less activated individuals are more susceptible to barriers to care and more easily discouraged from taking action when faced with financial or systemic obstacles.

At the same time, individuals with chronic conditions who are more activated appear to receive greater support from their health care providers in managing their health. For instance, 83.6 percent of those at the highest activation level reported that their health care provider helped them establish goals to improve their diet, compared with just 48.3 percent at the lowest activation level (see Table 4). Highly activated patients were also more likely to report that their provider helped them set exercise goals and instructed them in how to self-monitor their condition. In summary, more activated patients tend to have more positive and supportive health care experiences. Because the direction of causality is uncertain, this pattern may reflect highly activated individuals being more skilled at selecting supportive health care providers who deliver the care they need, or alternatively, it may indicate that greater provider support itself contributes to higher patient activation levels.

Discussion and Policy Implications

Activated consumers adopt a proactive stance toward managing their health and health care. An individual's activation level reflects their beliefs about their role in health management, as well as their knowledge and confidence to fulfill that role.

This represents a considerably broader conception of consumer activation than the one typically emphasized by consumer-directed health plans, which primarily aim to heighten consumer sensitivity to costs. From a policy perspective, cost sensitivity alone may be a necessary but insufficient condition for meaningful consumer engagement. In reality, heightened cost awareness is merely one expression of a more activated consumer, for whom personal resourcefulness, education, and motivation are prerequisites for seeking information about cost, quality, and other critical dimensions of health care. A particularly noteworthy finding is that higher activation levels are associated with significantly fewer problems accessing care, even after controlling for insurance coverage and income -- a pattern that likely reflects greater resourcefulness among more highly activated individuals in navigating the complexities of the health care system and overcoming barriers.

The findings reveal that activation levels differ substantially across socioeconomic and health status characteristics. Because activation levels are linked to important outcomes such as care-seeking, information-seeking, and health behaviors -- and because activation is a modifiable attribute -- it represents a potentially powerful lever for change.

Additional research suggests that individuals who live, receive their health care, and work in environments that support proactive health behaviors tend to be more activated. While the direction of causality cannot be established, one interpretation of this study's findings is that physician support -- such as helping patients learn to monitor their condition or develop an exercise plan -- stimulates patient activation. If this interpretation is correct, then encouraging this form of physician support may be a productive pathway for boosting activation. This may be especially critical for those at lower activation levels, who not only engage in fewer health-promoting behaviors but also tend to be passive regarding their health care. These individuals are particularly vulnerable to health declines and inadequate health care. The disproportionate representation of less-activated individuals among racial and ethnic minority groups suggests that focusing on this attribute could be a viable avenue for narrowing some of the racial and ethnic disparities in health.

Perhaps the central question for policy makers is what -- if anything -- can be accomplished from a policy standpoint to raise levels of patient activation. Because activation is changeable and provider support appears to be an influential factor, creating incentives or holding health care delivery systems and providers accountable for patient gains in activation represents a promising policy direction.

Certain models of care delivery are more conducive to supporting patient activation than others. For example, the medical home model -- where patient-centered care is the focus and a functioning medical team provides coordinated care -- allows for customizing care to bolster activation. Similarly, in community health centers, where dedicated staff members support patient self-management, explicit efforts to promote activation could be implemented.

Conversely, the study results should give pause to policy makers who are advancing consumer-directed health care within the Medicaid program. For example, Indiana became the first state in 2008 to implement a high-deductible plan and health savings account program for certain uninsured and Medicaid enrollees under the President's Affordable Choices Initiative. Other states, including Florida, West Virginia, Kentucky, and South Carolina, also experimented with various types of consumer-directed care models in their Medicaid programs, aiming to incentivize enrollees to assume more responsibility -- and risk -- for their health care utilization.

However, Medicaid enrollees are among the least-activated patients across all insurance groups, which reflects both lower educational levels and lower socioeconomic status. The findings suggest that efforts to increase patient responsibility within the Medicaid program will only succeed if they are accompanied by robust efforts to educate enrollees and elevate their levels of activation.

Notes

1. Hibbard, Judith H., et al., "Consumer Activation and Racial and Ethnic Health Disparities," Health Affairs, Vol. 27, No. 5 (September/October, 2008).

2. Hibbard, Judith H., et al., "Development of the Patient Activation Measure (PAM): Conceptualizing and Measuring Activation in Patients and Consumers," Health Services Research, Vol. 39, No. 4 (2004); Hibbard, Judith H., et al., "Development and Testing of a Short Form of the Patient Activation Measure," Health Services Research, Vol. 40, No. 6 (2005); Mosen, David M., et al., "Is Patient Activation Associated with Outcomes of Care for Adults with Chronic Conditions?" Journal of Ambulatory Care Management, Vol. 30, No. 1 (2007); Hibbard, Judith H., "Assessing Activation Stage and Employing a 'Next Steps' Approach to Supporting Patient Self-Management," Journal of Ambulatory Care Management, Vol. 30, No. 1 (2007); and Becker, Edmund R., and Douglas W. Roblin, "Translating Primary Care Practice Climate into Patient Activation: The Role of Patient Trust in Physician," Medical Care, Vol. 46, No. 8 (2008).

3. Hibbard, Judith H., et al., "Do Increases in Patient Activation Result in Improved Self-Management Behaviors?" Health Services Research, Vol. 42, No. 4 (2007).

4. Becker, Edmund R., and Douglas Roblin, "Survey of Health and Healthy Behaviors Among Working Age Kaiser Permanente Adults in 2005," presented at the Annual Research Meeting of AcademyHealth, Orlando Fla., (June 2007); Becker and Roblin (2008).

5. Because there is a large range of scores represented in Level 4 activation, Hibbard and colleagues are examining a 5-level model, which would add more precision to the higher end of the activation dimension.

6. Hibbard, et al. (2004); Hibbard, et al. (2005); Mosen, et al. (2007); Hibbard (2007); and Becker and Roblin (2008).

7. Becker and Roblin (2007) and Becker and Roblin (2008).

Data Source

The data for this report come from the HSC 2007 Health Tracking Household Survey, a nationally representative telephone survey of the civilian noninstitutionalized U.S. population funded by the Robert Wood Johnson Foundation. The sample encompasses approximately 17,800 individuals, including about 15,500 adults aged 18 and older. The survey achieved a response rate of 43 percent. Population weights adjust for probability of selection and differences in nonresponse based on age, sex, race/ethnicity, and education. Information was gathered on all adults in the family as well as a randomly selected child.

The 13-item Patient Activation Measure (PAM) was administered to all adults aged 18 and over and was self-reported. Although the PAM was originally designed for use with individuals who have chronic conditions, a slightly modified version was developed for those without chronic conditions (see Appendix). Survey participants were asked whether they had one or more of 10 common chronic conditions, including diabetes, arthritis, asthma, chronic obstructive pulmonary disease, hypertension, other heart disease, cancer, skin cancer, depression, or uterine bleeding. Individuals who reported one or more of these conditions were administered the original PAM version (i.e., for persons with chronic conditions), while those who did not report any of the 10 conditions received the modified PAM questions (i.e., for persons without chronic conditions).

Both versions of the PAM questions employ Likert-type response categories, including strongly agree, agree, disagree, and strongly disagree. Individuals who reported "not applicable," "don't know," or "refused" on more than half of the PAM scale items (7 or more) were excluded from the analysis. Additionally, those who answered "strongly agree" or "strongly disagree" on all 13 items were treated as outliers and also removed from the analysis. After these exclusions, responses from approximately 13,500 adults were used to construct the PAM scale. Scale construction involved computing a "raw score" by summing the responses to all 13 questions. For individuals missing one or more PAM items, the raw score was calculated by dividing the sum of scores for non-missing items by the number of non-missing items. Following the established PAM methodology, an activation score from 0 to 100 was assigned to each person based on their raw score.

Identifying activation levels is based on whether an activation score falls within a previously established range of scores. Level 1, the lowest activation level, encompasses activation scores of 47 or lower; Level 2 includes scores of 47.1 to 55.1; Level 3 includes scores of 55.2 to 67.0; and Level 4 (the highest activation level) includes scores of 67.1 or above.

Sources and Further Reading

Robert Wood Johnson Foundation — Funder of the HSC Health Tracking Household Survey, with publications on consumer engagement, health equity, and delivery system reform.

AHRQ CAHPS Surveys — Federal patient experience surveys measuring consumer engagement with health care providers, including tools for assessing patient activation.

Health Affairs: Consumer Activation and Health Disparities — Hibbard et al. research on the relationship between patient activation levels and racial and ethnic health disparities.

CMS Quality Initiatives — Medicare quality measurement programs that increasingly incorporate patient engagement and self-management support into provider accountability.

KFF: Medicaid — Analysis of Medicaid enrollment, benefits, and consumer-directed care models discussed in this study, including state-level program variations.