Defining the Future of Primary Care: What Can We Learn from Patients?

From the earliest definitions of the term primary care to the most recent, all have stressed that primary care is predicated on a sustained relationship between patients and the clinicians who care for them (1-5). Most definitions have indicated that the primary care provider can be a single clinician or team and have not delineated particular clinical disciplines to which primary care belongs. Beyond the requirement for sustained clinicianpatient relationships, primary care has been defined to encompass the following essential elements: accessibility, continuity, integration, a whole-person orientation, comprehensiveness, and clinical management (1-5). Drawing on information obtained from adults nationwide, I examine the status of primary care relationships in the United States, identify key strengths and limitations as experienced and reported by patients, and propose possible directions for improving performance and outcomes in primary care. The Status of Primary Care Relationships in the United States: What Patients Tell Us Having a Primary Physician No administrative data systems track the percentage of Americans with a primary care provider. However, numerous national surveys suggest that most Americans have a primary care provider, and that most consider their primary care provider to be a particular named physician, not a site or group. Moreover, despite marked changes in U.S. health care systems over the past two decadesin particular, the emergence of managed care arrangements that emphasize the role of the primary care physicianthe percentage of Americans who report having a regular source of care has changed little. In 1975, when the concept of primary care was first being formalized in the United States, 88% of adults reported having a regular source of care: Seventy-eighty percent named a particular physician and 10% considered an institution or several physicians to fulfill this role (6). In 1987, the National Medical Expenditure Survey reported that 82% of Americans had a usual source of care (7). In 1994, 80% of adults completing the General Social Survey (8), which was administered to a national probability sample of U.S. households, reported having a particular physician whom they considered to be their regular personal doctor. And in the 1996 Medical Expenditure Panel Survey, administered to a national probability sample of U.S. households, 77% of Americans reported having a usual primary care provider (9). The Medical Expenditure Panel Survey may have underestimated this figure somewhat owing to the criteria it applies. The Medical Expenditure Panel Survey defines usual primary care provider as a particular health professional or site to which the patient goes under each of four circumstances, including to obtain a referral to other health professionals. Approximately half of insured Americans have coverage that does not require referrals for specialty care (10-14). With regard to clinical specialty, available data suggest that the majority of Americans rely on generalist physicians for their primary care but that a substantial minority rely on specialists (6, 15, 16). No national estimates are available of the percentage of Americans who view a nurse practitioner or other nonphysician as their primary care provider. Primary Care Experiences Reported by Patients from 1986 to 2000 With this picture of primary care arrangements in the United States, and the understanding that these arrangements have been remarkably stable despite dramatic changes in the organization and financing of care, it is useful to learn about the primary care experiences reported by patients. What are the relative strengths and weaknesses of primary care from the patient's viewpoint? To what extent do patients perceive the quality of primary care to be changing? What accounts for these changes? This article summarizes findings from two longitudinal research studies that administered the Primary Care Assessment Survey (PCAS) to U.S. adults of all ages. The Massachusetts Study of Primary Care Performance administered the PCAS in 1996 and 1999 to a longitudinal panel of adults sampled from each of 12 commercial health plans. The Study of Choice and Quality in Senior Health Care administered the PCAS annually from 1998 to 2000 to a longitudinal panel of Medicare beneficiaries sampled from the traditional (fee-for-service) Medicare program and Medicare health maintenance organizations in 13 states with high rates of managed Medicare participation (Arizona, California, Colorado, Florida, Illinois, Massachusetts, Minnesota, New Mexico, New York, Oregon, Pennsylvania, Texas, Washington). Details of the design and methods of both studies are published elsewhere (15, 17-25). The PCAS (15) is a validated, patient-completed questionnaire that measures the defining characteristics of primary care posited by the Institute of Medicine Committee on the Future of Primary Care (2) and others (1, 3-5). The PCAS measures seven features of primary care through 11 summary scales: access (financial and organizational), continuity (relationship duration and visit-based continuity), comprehensiveness (whole-person knowledge of the patient and preventive risk counseling), integration of care, quality of the clinicianpatient interaction (clinicianpatient communication and thoroughness of physical examinations), interpersonal treatment, and patient trust (15). All concepts are measured in the context of a specific clinicianpatient primary care relationship and reference the entirety of that relationship (that is, the survey is not visit-specific). The PCAS does not assess technical aspects of quality of care owing to limitations of patient-provided information about this domain (26-30). Sustained Partnerships Providing Whole-Person Care: How Are We Doing? The importance of sustained, whole-person oriented care from the physician's perspective is well illustrated by these quotes from a 1994 study on the definition of primary care (31). Well, continuous care is the notion. The whole idea is that it's not episodic around the problem. The commitment is long-term. It's a commitment to the patient that you are going to be there tomorrow and the next day. That what you do now is going to be building for everything you're going to be doing in the future. Other men and women are responsible for different parts and pieces and different areas, but there must be, there has to be, there should be one person responsible for the whole picture. Who has the ability, cognitively and emotionally, to put it all together and to put the different recommendations into a context of that patient's life. I think the way you get that is by really trying to understand who the patient is. And again, understanding who the patient is will be much more than just a review of the organ systems. Despite these compelling testimonials from clinicians, patient data suggest that whole-person care is a weak link in primary care performance. Whole-person care consistently ranks lowest among five PCAS measures of interpersonal care (19, 21, 23). Except for knowledge of their medical history, only about one third of patients consider their physician's knowledge about them to be excellent or very good (Table 1). The majority of patients rate their physician's knowledge about them and their life circumstances as good, fair, poor, or very poor. This finding constitutes weak performance on a defining and distinctive feature of primary care. The result is striking in light of evidence of considerable continuity in U.S. primary care relationships. Three quarters of adults in these samples had gone to their primary physician for 3 years or more (19, 23). Moreover, the results did not vary meaningfully by patients' sociodemographic characteristics or health status: Only age, education, and health status were significantly associated with patients' assessment of their care, and even for these variables, the effects were small and together explained less than 5% of the variance in multivariate regression models. These findings are highly consistent with existing evidence on the relationship between patient characteristics and patient-based assessments of care (32-35). Table 1. Patients' Views of How Much Their Primary Care Physician Knows about Their Medical History and Life Circumstances The Performance of Primary Care Teams Formal definitions of primary care posit that it can be provided by an individual clinician or a team (1-5). The functioning of primary care teams has important bearing on primary care physicians' ability to meet the objectives of whole-person care and sustained partnerships. Throughout the United States, practices rely substantially on teams to provide primary care. Yet, available evidence from patients reveals a large gap between the reality of team care and the ideals of sustained clinician-patient partnerships providing care in the context of family and the community (2). Consider that there is a distinction between visible and invisible team care, and that most U.S. patients experience invisible team care. In visible team care, the members of the primary care team and their respective roles are known to and understood by the patient. In invisible team care, the roles and identities of the other clinicians involved in the patient's care are not clear to the patient; rather, the patient relates to these others as not my doctor rather than as part of a team of clinicians with whom he or she has a sustained primary care partnership. Among patients nationwide who report having a primary physician, approximately half report that there are other clinicians in their physician's practice who play an important role in their care (19, 23). Roughly half of patients rate both the quality of care by these other clinicians and their coordination with the primary physician as excellent or very good (Table 2). However, interpersonal elements of team care have considerable failings. Three