What makes health services usable?: Insights from a qualitative study of caregivers of children with disabilities.

BACKGROUND: The concept of usability from the field of user-centered design addresses the extent to which a system is easy to use, including under extreme conditions. Apart from applications to technologies, however, little attention has been given to understanding what shapes usability of health services more generally. Health service usability may impact the extent to which patients avail themselves of and benefit from those services. PURPOSE: The aim of the study was to develop the concept of usability as it applies to health services, particularly for a high-need, complex patient population. APPROACH: We conducted interviews and focus groups with 66 caregivers of children with disabilities and analyzed data through inductive coding and constant comparison. RESULTS: We find that before health services can be rendered usable for patients with complex health conditions, work is often required to develop trusting relationships with individual providers and to manage time demands and attendant challenges of physical access. In addition, our findings show that actions crucial to receiving benefits from one service often entail difficult tradeoffs either with other services or with other important features in the patient's life-world. Finally, we propose the concept of configuration to capture the complex interdependent arrangement of connections to multiple health services, often for multiple household members, and other life-world factors (e.g., employment, transportation, living conditions). These configurations are dynamic, fragile, and vulnerable to shocks-events that destabilize them, often negatively impacting the relative usability of services and of the entire configuration. Collectively, these findings illustrate health service usability as a relational, situated, emergent property rather than an inherent feature of the service itself. PRACTICE IMPLICATIONS: System-centered design perspectives produce services that are usable for the mythical "ideal" user. To be truly "patient centered," designs must "decenter" the health service and recognize it as one component of the patient's life-world configuration.

Why Do Some Caregivers of Children with Disabilities Participate in Care Management While Others Do Not? Lessons from a Population in a Pediatric Accountable Care Organization.

Accountable care organizations (ACOs) offer care coordination services in an attempt to lower costs while improving the quality of care; however, not all families participate. We conducted focus groups and individual interviews with caregivers of children who recently joined a pediatric ACO and evaluated why some caregivers of children with disabilities engage in care coordination while others do not. Four common themes emerged as factors influencing the degree of caregiver engagement in care coordination services. These themes include: (1) availability, (2) alignment of services with family need, (3) ease or difficulty of engagement, and (4) timing of services. These findings suggest that considering caregiver perspectives across stages of program development and implementation could encourage more caregivers to engage in care coordination programs.

Can Payment Reform Be Social Reform? The Lure and Liabilities of the "Triple Aim".

The formulation of the triple aim responds to three problems facing the US health care system: high cost, low quality, and poor health status. The purpose of this article is to analyze the potential of the health care system to achieve the triple aim and, specifically, the attempt to improve population health by rewarding providers who contain costs. The first section of the article will consider the task of improving population health through the health care system. The second section of the article will discuss CMS's efforts to pay providers to achieve the triple aim, that is, to improve health care and population health while containing cost. These include Maryland's Global Revenue Budget model, bundled payments, and ACOs, and they highlight the extent to which this version of integration is underwritten by savings achieved by providers for the Medicare program. The conclusion section of the article will consider the politics of payment reform as social reform. It will address proposals that health care payers and providers lead in addressing the social contributors to ill health and urge payment reformers to appreciate more fully the politics and policies of other sectors and the dynamics of their inclusion in population health improvement.

What Is the Value of Value-Based Purchasing?

Value-based purchasing (VBP) is a widely favored strategy for improving the US health care system. The meaning of value that predominates in VBP schemes is (1) conformance to selected process and/or outcome metrics, and sometimes (2) such conformance at the lowest possible cost. In other words, VBP schemes choose some number of "quality indicators" and financially incent providers to meet them (and not others). Process measures are usually based on clinical science that cannot determine the effects of a process on individual patients or patients with comorbidities, and do not necessarily measure effects that patients value; additionally, there is no provision for different patients valuing different things. Proximate outcome measures may or may not predict distal ones, and the more distal the outcome, the less reliably it can be attributed to health care. Outcome measures may be quite rudimentary, such as mortality rates, or highly contestable: survival or function after prostate surgery? When cost is an element of value-based purchasing, it is the cost to the value-based payer and not to other payers or patients' families. The greatest value of value-based purchasing may not be to patients or even payers, but to policy makers seeking a morally justifiable alternative to politically contested regulatory policies.

Teaching by (bad) example: what a confused attempt to "advance" EBM reveals about its underlying problems: commentary on Jenicek, M. (2015). Do we need another discipline in medicine? From epidemiology and evidence-based medicine to cognitive medicine and medical thinking. Journal of evaluation in clinical practice, 21:1028-1034.

Professor Jenicek's paper is confused in that his proposal to 'integrate' what he means by 'evidence-based scientific theory and cognitive approaches to medical thinking' actually embodies a contradiction. But, although confused, he succeeds in teaching us more about the EBM debate than those who seem keen to forge ahead without addressing the underlying epistemological problems that Jenicek brings to our attention. Fundamental questions about the relationship between evidence, knowledge and reason still require resolution if we are to see a genuine advance in this debate.

Instrumentality in health care: a response to Adam Oliver.

In his paper, 'Incentivizing improvements in health care delivery', Adam Oliver discusses recent efforts to manage the performance of health care workers in the United States and United Kingdom. Overall, the results of performance management seem to be mixed, but Oliver's discussion hints at a more fundamental question about this approach, specifically: what are the limits of a focused instrumentality in a context as rich, fluid and collaborative as the delivery of health care? Might performance management schemes actually frustrate the efforts of conscientious health care workers? Indicators make few allowances for the heterogeneity of treatment effects or patient values or preferences. Health care workers may also face pressure to appear to satisfy indicators that are actually impossible to satisfy.

What is Patient-Centered Care? A Typology of Models and Missions.

Recently adopted health care practices and policies describe themselves as "patient-centered care." The meaning of the term, however, remains contested and obscure. This paper offers a typology of "patient-centered care" models that aims to contribute to greater clarity about, continuing discussion of, and further advances in patient-centered care. The paper imposes an original analytic framework on extensive material covering mostly US health care and health policy topics over several decades. It finds that four models of patient-centered care emphasize: patients versus their parts; patients versus providers; patients/providers/states versus "the system"; and patients and providers as persons. Each type is distinguishable along three dimensions: epistemological orientations, practical accommodations, and policy tools. Based on this analysis, the paper recommends that four questions be asked of any proposal that claims to provide patient-centered care: Is this care a means to an end or an end in itself? Are patients here subjects or objects? Are patients here individuals or aggregates? How do we know what patients want and need? The typology reveals that models are neither entirely compatible nor entirely incompatible and may be usefully combined in certain practices and policies. In other instances, internal contradictions may jeopardize the realization of coherent patient-centered care.

Particularism in health care: challenging the authority of the aggregate.

In health care, particularism asserts the primacy of the individual case. Moral particularists, such as Jonsen and Toulmin, reject deduction from universal moral principles and instead seek warrants for action from the multiple sources unique to a given patient. Another kind of health care particularism, here referred to as the knowledge of particulars, is offered as a corrective to evidence-based medicine (EBM), its influence on health care practice and policy, and specifically to EBM's reliance on the aggregate. This paper describes the knowledge of particulars and identifies strategies for its legitimation in health care policy and practice. First, the paper documents the ascendancy of the aggregate through EBM's definition of 'what works' in health care. Second, it delineates the limits of health care knowledge based on the analysis of aggregates, not only for the care of individual patients but for the formulation of policies about patient care. Third, the paper analyses prominent rejections of the particular in contemporary health policy discourse and relates them to larger political purposes. Finally, it depicts the knowledge of particulars as the basis for clinical prudence and offers three potential strategies for promoting particularism as essential to high-quality care.

Advocating self-advocacy: board membership in a statewide mental health consumer organization.

Until 2008 Ohio Advocates for Mental Health was a statewide mental health advocacy organization run by mental health consumers and supportive of consumer-run organizations around the state. The author's tenure on the board entailed repeated engagement with questions of identity - self-identity, peer support through personal identification, and negotiation of public identities with provider groups and the state agency. These are fundamental to defining and legitimating the claims of mentally ill people not just for health care resources but for full participation as citizens in the public sphere.

Reducing variation in health care: the rhetorical politics of a policy idea.

For decades, geographic variation in the use and cost of health care has captured the imagination of researchers and policy makers. As a policy problem, variation suggests its own solution--reducing variation--but the substantive weaknesses of this policy idea invite a second look at its success. This article considers the politics of policy ideas to analyze the potential rhetorical strengths of reducing variation. It finds that this idea appeals to multiple health care audiences, remains practically and politically ambiguous as to problem and solution, and resonates with long-held aspirations of policy elites, including being hopeful about solving the seemingly intractable problems of the US health care system.

Improving the quality of medical care: the normativity of evidence-based performance standards.

Poor quality medical care is sometimes attributed to physicians' unwillingness to act on evidence about what works best. Evidence-based performance standards (EBPSs) are one response to this problem, and they are increasingly employed by health care regulators and payers. Evidence in this instance is judged according to the precepts of evidence-based medicine (EBM); it is probabilistic, and the randomized controlled trial (RCT) is the gold standard. This means that EBPSs suffer all the infirmities of EBM generally-well rehearsed problems with the external validity of research findings as well as the inferential leap from study results in the aggregate to individual patient care. These theoretical weaknesses promise to have a practical impact on the care of patients. To avoid this, EBPSs should be understood as guidelines indicative of average effectiveness rather than standards to be applied in every case.

Consumer-operated service organizations: organizational characteristics, community relationships, and the potential for citizenship.

Consumer-operated service organizations (COSOs) are independent organizations whose administrative and financial control resides with consumers. Based on a 2008 mail survey and followup interviews conducted in 2009, this study depicts the internal characteristics and external relationships, as well as some relationships between the two, of COSOs in one state. Profiles include on the one hand, governance structures, services provided, sources and levels of funding, etc. and on the other, relationships between COSOs and other actors in the mental health system and the local community. COSOs emerge as more self-governing and community-based than required by certification requirements and as developing internally and externally in tandem. COSOs are not only adjunct or alternative service providers, but also civic associations and loci for the expression of citizenship by mentally ill people.

Characteristics associated with organizational independence in consumer-operated service organizations.

OBJECTIVE: This research compares two types of consumer organizations in one state in order to explore the significance of organizational independence for internal structure/operations and external relationships. The first type, consumeroperated service organizations (COSOs), are independent and fully self-governing; the second are peer-support service organizations (PSSOs), which are part of larger non-consumer entities. METHODS: Mail surveys were completed by COSO and PSSO directors of a geographically representative sample of organizations; telephone interviews were conducted with a sub-sample. Owing to small sample size, matched COSO-PSSO pairs were analyzed using non-parametric statistics. RESULTS: COSOs and PSSOs are similar in some ways, e.g., types of services provided, but significantly different on internal variables, such as budget size, and external variables, such as number of relationships with community groups. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: Organizational independence appears to be a significant characteristic for consumer service organizations and should be encouraged by funders and among participants. Funders might establish administrative and/or programmatic measures to support consumer organizations that are independent or moving toward independence; their participants would also benefit from the provision, by authorities or advocates, of materials to guide organizations toward, for example, 501(c)3 status.

Mental health consumer-operated services organizations in the US: citizenship as a core function and strategy for growth.

Consumer-operated services organizations (COSOs) are independent, non-profit organizations that provide peer support and other non-clinical services to seriously mentally ill people. Mental health consumers provide many of these services and make up at least a majority of the organization's leadership. Although the dominant conception of the COSO is as an adjunct to clinical care in the public mental health system, this paper reconcieves the organization as a civic association and thereby a locus of citizenship. Drawing on empirical research on COSOs in one state and the citizenship and civic democracy literatures, COSOs are analyzed here as membership organizations with democratic norms and strong ties to local communities. The suggestion is made that by embracing and enhancing their status as civic associations, COSOs may advance the goals of the social movement that spawned them and avoid predictable obstacles to further growth and development.

Pay for performance in Medicare: evidentiary irony and the politics of value.

Pay for performance (P4P) is of growing importance in the Medicare program. Pay-for-performance policy has the support of political actors in both parties and in the legislative and executive branches; of experts, business, and consumer interests; and in a qualified way, of health care providers. The evidence that P4P improves quality or reduces cost, however, is scant, although P4P proponents claim that the program is evidence based. This article reviews the history of Medicare P4P, documents its widespread support, and evaluates both the evidence of its effectiveness and the expert discourse about that evidence. The article analyzes the political reasons for Medicare P4P's popularity despite its evidentiary deficiencies and emphasizes its role in the politics of value. Pay for performance allows Medicare policy makers to (1) reformulate intractable cost and quality problems as more malleable value problems; (2) offer an acceptable quid pro quo for payment negotiations with providers; and (3) reach a rare, if shallow, consensus based on the ideological ambiguity of P4P.

Who treats limited English proficient patients? Implications for linguistic access initiatives.

BACKGROUND: Growing linguistic diversity in the United States brings serious challenges for healthcare providers. Federal civil rights policy requires that physicians participating in Medicaid and State Children's Health Insurance Program (SCHIP) provide meaningful access for their limited English proficient (LEP) patients. Key to compliance is the criterion that the provider's responsibility is proportional to the number of LEP patients likely to be served. OBJECTIVES: This article identifies which physicians are most likely to treat LEP patients and the source of payment for these visits in a traditionally low immigration state. PROCEDURES: The study utilizes 2006-2007 survey data from a random sample of 202 South Carolina physicians' practices. Descriptive statistics establish a profile for practitioners who most frequently treat LEP patients, and ordinary least squares models determine the salient characteristics for providers treating LEP patients. MAIN FINDINGS: This study finds that public and community clinics and, to a lesser degree, OB/GYN practices, in counties with over 6% Hispanic population provide a disproportionate share of care to LEP patients. Furthermore, 54.7% of LEP visits were uninsured or self-pay, with the result that LEP patients concentrate in practices that serve the uninsured. CONCLUSIONS: Proposals seeking to increase linguistic access by requiring insurers to cover interpretation services are unlikely to achieve more than a limited impact due to the low insurance coverage rates among LEP patients. The burden of compliance with current linguistic access regulations is heaviest for practices that treat the highest proportion of uninsured and that have the fewest resources to meet regulatory requirements.

Comparative effectiveness research: evidence-based medicine meets health care reform in the USA.

Rationale Comparative effectiveness research (CER) is the study of two or more approaches to a health problem to determine which one results in better health outcomes. It is viewed by some in the USA as a promising strategy for health care reform. Aims and Objectives In this paper, nascent US CER policy will be described and analysed in order to determine its similarities and differences with EBM and its chances of success. Methods Document review and process tracing Results CER shares the logic of policies promoting evidence-based medicine, but invites greater methodological flexibility to ensure external validity across a range of health care topics. Conclusions This may narrow the inferential distance from knowledge to action, but efforts to change the US health care system through CER will face familiar epistemological quandaries and 'patient-centred' politics on the left and right.

Perspectives on evidence-based practice from consumers in the US public mental health system.

RATIONALE, AIMS AND OBJECTIVES: Evidence-based practice (EBP) is a matter of mental health policy in USA. Supporters find it useful in two forms, as generating a list of approved practices and as providing information to practitioners and consumers engaged in shared decision making. Almost nothing has been written about consumer perspectives on EBP. Given that they play an important role in the second form of EBP, this study explores the range and logic of these perspectives and of related views about the role of information in decision making. METHODS: Four focus groups (n = 38) were held in two settings in a Midwestern state in 2005. Thirty-nine face-to-face semi-structured interviews were conducted at three settings in 2006. Focus group members and interviewees were seriously mentally ill consumers in the public mental health system. Focus group sessions and interviews were audiotaped and transcribed. Thematic categories and subcategories were analysed. RESULTS: Focus group members and interviewees varied among themselves and between groups in their responses, but three major thematic categories emerged in both groups - consumers have positive and negative attitudes towards evidence; consumers seek and receive information from multiple sources; and consumers have competing and complementary principles for decision making. Interviews revealed that although real shared decision making is rare, consumers want to and may be involved in decisions about their care. CONCLUSIONS: EBP per se has mostly by-passed consumers in the public mental health system, but at least some want to be better informed about and more involved in their care. Their misgivings about evidence are reasonable and resonate with the principles of the recovery movement.

Consumer perspectives on information and other inputs to decision-making: implications for evidence-based practice.

This study is an exploration of mental health consumers' perspectives on information, including scientific information, and on other inputs to decision-making. Four focus groups were held with severely mentally ill consumers at two sites in the summer of 2005. Consumers varied in age, race and diagnosis. Participant responses were coded by theme and into subthematic categories. Implications for evidence-based decision-making included that: consumers desire and seek information about their illnesses and the mental health system; consumers identify scientific studies as information with special and welcome properties; and consumers also identify other influences on their decision-making, most of which fall under the "recovery" rubric.