Editor’s note: For more on engaging patients to be active participants in their own care, see the February issue of Health Affairs, “New Era Of Patient Engagement.”
The dramatic expansions in health insurance coverage included in the Patient Protection and Affordable Care Act (ACA) will give millions of low-income Americans greater choice in where and how they receive their health care. Until now, most of the discussion around our changing healthcare landscape has focused on the goals of payers and providers, rather than the needs and desires of patients. Although policymakers have emphasized the importance — and necessity — of engaging patients differently under reform, there have been few data to inform these discussions.
Against this backdrop, Blue Shield of California Foundation commissioned a series of representative, random-sample surveys of Californians aged 19 to 64 with household incomes less than 200 percent of the federal poverty level. The ultimate goal of these surveys is to bring the voices of low-income Californians into the conversation about how best to deliver care in the ACA-shaped future in order to inform policy choices and help providers prepare for a reformed healthcare system.
The first report, On the Cusp of Change: The Healthcare Preferences of Low-Income Californians, based on a spring 2011 survey, revealed that fewer than half of low-income residents feel satisfied with their current health care and six in ten report being interested in switching to a new facility if they had the insurance to cover it. With full implementation of the ACA rapidly approaching in 2014, providers serving low-income Californians will have to change the way that they practice in order to retain their current patients, and attract those who are newly eligible for coverage.
The results indicate that staff courtesy, facility cleanliness, the amount of time patients spend with the doctor, and how involved patients are in making decisions are among the strongest independent predictors of overall quality-of-care ratings. The results also clearly demonstrate the critical role of the doctor-patient relationship. Not only does having a well-regarded personal doctor greatly increase respondents’ overall satisfaction and loyalty, but lacking and wanting a personal doctor is a key driver of respondents’ interest in seeking out a new healthcare facility.
What Patients Want
The results of a follow-up survey in spring 2012 were published in a report titled Connectedness and Continuity: Patient-Provider Relationships Among Low-Income Californians. Report findings revealed a striking “connection chasm” between low-income patients and their providers. The survey found that eight in ten low-income Californians think it’s important to have someone at their healthcare facility “who knows them pretty well,” yet just 38 percent currently have such a connection. Continuity with a care provider also is lacking — only a third of those surveyed report that they always see the same care professional on each visit.
This “connection chasm” has significant implications. Low-income Californians with a personal connection, or who regularly see the same provider, are far more likely than others to be satisfied with the quality of their care. These patients also report feeling very informed about their health, very comfortable asking questions of their provider, able to comprehend their providers’ medical explanations, and very confident in their ability to make healthcare decisions and take an active role in their care. In short, connected patients are more empowered and engaged in their care, as well as more satisfied with the care they receive.
Currently, connectedness and continuity are primarily established through a traditional doctor-patient relationship. Yet, the one-on-one, physician-based model is not the only option. Statistical modeling shows that having a personal doctor, in and of itself, does not independently predict healthcare empowerment, engagement or satisfaction among low-income Californians. Instead, it is connectedness and continuity that independently predict these key outcomes — regardless of whether the care experience is via a traditional doctor-patient relationship or other means. This suggests that alternatives to the traditional model can effectively and efficiently deliver the care patients want and need, provided they establish connectedness and continuity.
Among low-income Californians, utilization of alternative models of primary care is relatively low — just a quarter say they have team-based care and 18 percent report having a healthcare navigator or coach. But positive regard for these models among current users is uniformly high, and openness to trying them among non-users is broad. For example, a near-unanimous 94 percent of current team-based care patients like the approach, and 81 percent of those who don’t have team-based care are willing to try it. Majorities are also open to trying group care, a healthcare coach, and using text- and Internet-based communication tools as part of their care.
Even more promising is the finding that team-based care helps to establish the connectedness low-income Californians seek. Indeed, while there is a broad connectedness gap between low-income patients who get their care from clinics and those who receive care at private doctors’ offices, that gap disappears among clinic patients who have team-based care. Specifically, among patients who receive care at a private doctors’ office, 51 percent say someone knows them well; among patients in team care programs at clinics, an identical 51 percent say the same. By contrast, among clinic patients who lack team-based care, connectedness falls to just 32 percent.
Modeling shows that the desire for a more personalized healthcare experience helps to drive openness to alternative care models, further underscoring the potential for these alternative programs to satisfy the need for connectedness and continuity. Wanting greater continuity in a care provider is a key predictor of both interest in a health coach and willingness to try team-based care. Moreover, openness to both team care and a health coach is higher among those who want, but currently lack a personal doctor, who have communication problems with their current care provider, and who desire a greater say in decisions about their care.
Identifying What Works
There is near-universal agreement in the healthcare field that encouraging engagement and shared decision-making will yield better outcomes for patients, providers, and the health system overall. Despite this consensus among experts, results from a second 2012 survey, Empowerment and Engagement among Low-Income Californians: Enhancing Patient Centered Care, found that four in ten low-income Californians prefer to leave healthcare decisions to their provider. Having an equal say appears more intimidating than appealing to some specific groups within the low-income population, particularly those of lower socioeconomic status.
However, providing clear information can shift that playing field. A follow-up question in the survey asked those who preferred to leave decisions to their provider how they would feel if their doctor has “selected treatment options for you — a choice of things you might do, any of which is medically appropriate — and you’ve been given information that you understand about these options. Under these conditions, interest in shared decision-making swelled to 81 percent, a 22-point increase once information is present.
Notably, many of the differences in initial preferences are greatly, or even entirely, attenuated when the offer of shared decision-making is accompanied by clear information. For example, between low-income Californians who lack a high school diploma and with those who have a college degree, there is a 25-point gap in initial preference for equal say (47 percent vs. 72 percent). That gap shrinks to just 7 points (76 percent vs. 83 percent) when clear information is added to the mix.
Clear provider-patient communication and easy-to-understand information are not only critical to shared decision-making, but also contribute to the broader goal of patient empowerment and engagement. By testing some of the basic principles of patient-centered care from the patient’s perspective, we produced a data-driven mediation model, based on a series of regression analyses, showing how these concepts can lead to a more engaged patient population. (See exhibit below, click to enlarge.) Here too, communication and information play key roles.
As seen in this model, connectedness and continuity are important starting blocks; they directly predict patient empowerment (defined as self-reported health information, comfort asking questions, comprehension of providers’ medical explanations and self-confidence). The product of that empowerment, in turn, is greater self-reported engagement in healthcare decisions.
Comparing marginal results on these factors across subgroups is striking. First, in terms of the importance of connectedness, low-income Californians who feel someone at their facility knows them well are 27 points more likely than others to feel very informed about their health (64 vs. 37 percent), 19 points more likely to report being very comfortable asking questions of their care provider (73 vs. 54 percent), 19 points more likely to always understand their providers’ instructions (56 vs. 37 percent) and 10 points more apt to be very confident in their ability to make care decisions. Continuity shows a similar relationship with these empowerment outcomes.
The data demonstrating the link between empowerment and engagement are equally clear. Low-income Californians who feel very informed about their health are 29 points more likely than those who feel less informed to report currently having a great deal of say in their care decisions. Those who feel very comfortable asking questions of their care provider, who always understand their providers’ instructions, and who feel very confident in their decision-making abilities are likewise 20, 23 and 22 points more apt than their less-empowered counterparts to report being actively engaged in their health care.
An important additional finding of the mediation model is that connectedness and continuity, as promising as they are, are not the only paths to increased patient empowerment. Even in the absence of connectedness and continuity, information remains an independent predictor of comfort, comprehension, confidence, and ultimately engagement.
Notably, the extent to which patients feel informed about their health predicts their engagement independently of – and more strongly than – their education, income, gender, race/ethnicity, language spoken at home, and the type of care facility they use. This suggests that clear information can help level the healthcare playing field across different population groups.
Implications For Safety-Net Providers
Although some of the perceptions of low-income Californians related to health care are self-evident, the health system has been very slow to respond. The window of opportunity and urgency created by the ACA should be used to accelerate progress on authentic patient engagement. In aggregate, these results suggest a compelling road map for safety-net providers over the next few years.
First, safety-net providers must recognize the importance of directly engaging patients — who will now have a choice in their health care — to understand their expectations and decision-making criteria. The expert opinions of policymakers and providers are not a substitute for hearing from patients directly.
Second, to retain patients, safety-net providers must improve the perceived quality of care within their facilities, focusing on mutable characteristics such as safety, courtesy, cleanliness of the facility, and time spent with the doctor.
Third, providers must address the important role of ongoing, personal relationships in a patient-centered medical practice and implement models of care that enhance patient connectedness and continuity. Notably, providers do not have to remain tied to the traditional primary care model of a patient linked to a doctor to achieve these goals. Alternative models of care show great promise in establishing the personalized health care experience many low-income Californians seek.
Lastly, all healthcare providers should appreciate the value of relevant, easy-to-understand health information in empowering patients to take an active role in their care. The charge from these research findings is clear: information is a critical tool to deliver patient-centered care. Information empowers patients, regardless of socioeconomic background, and even in the absence of connectedness and continuity. Safety-net facilities that train providers and staff to convey information in a way that crosses language, sociocultural, and educational barriers will encourage a more fully engaged patient population.
Although many of the healthcare preferences of low-income patients are self-evident, the health system has been very slow to respond. These reports clearly identify the inevitability of change within California’s safety net. However, it is the urgency created by the ACA that must ultimately be leveraged to accelerate progress towards a truly patient-centered healthcare system.