Introduction

Low-value care, defined as “patient care that provides no net benefit in specific clinical scenarios”, has become a concern at the global level [1 p. 333]. Low-value care is associated with harmful patient outcomes, wasteful spending and increased cost of care [2]. Few explorations of the cost of low-value care have been noted. In the United States, low-value care has been associated with cost-effectiveness ratios greater than $100 000 to $150 000 USD per quality-adjusted life-year (QALY) [3]. In Canada, the Canadian Institute for Health Information (2016) estimated that $228.1 billion ($6299 per Canadian) was spent on healthcare in Canada [1]. Of these costs, the public sector’s share of total healthcare spending (69.8 percent) was $159.1 billion. In 2016, this added up to approximately $148.3 billion (about $4,095 per person) of expenditures by provinces and territories [4]. From 2001, the costs have increased by 116.4 percent [5]. A recent report also found up to 30% of selected medical tests, treatments and procedures in Canada are potentially unnecessary and that Canadians have more than one million potentially unnecessary medical tests and treatments every year [6]. This pandemic of low-value care affects the sustainability of publicly funded healthcare systems globally, requiring patients, healthcare providers and policymakers to cooperate in finding socially and politically acceptable solutions [7–9].

The principles of the Canada Health Act stipulate that reasonable access to publicly administered insured health services must be comprehensively and universally guaranteed for all Canadians regardless of their provincial residence [10]. Less clear is what should the insured services be and what is reasonable? On two separate occasions, the Supreme Court of Canada has had to render decisions on these issues [11, 12]. Both times, the Court has ruled against the healthcare providers’ definitions of reasonable insured services, suggesting Canadians may view the healthcare system as an infinite resource instead of a common pool resource [13].

In an environment with constant pressure to provide ever-increasing and costly healthcare services [14–16], a general framework to assess the sustainability of these healthcare systems is desperately needed. The a priori core assumptions that must be agreed upon before developing such a sustainability framework are that these healthcare systems are complex with multiple components that interact in both linear and non-linear ways, and two, there will never be a single governance solution that applies to all systems [17]. The common pool resource model provides an ideal description of the two defining characteristics of our publicly funded healthcare system; it is difficult to fence off access to resource use, and use by someone reduces access by another user [13]. In Ostrom’s model of human resource use, she describes a complex socio-ecologic system composed of four core sub-systems; resource systems, resource units, governance systems and users [13]. Each of these is composed of other relevant variables important for the analysis of system sustainability. For example, across many different ecological systems, the importance of the resource to users and users’ deep understanding of the system is critical to users’ involvement in self-governance and sustainability of the resource.

While Ostrom developed this system to explain the patterns of human use of ecological resources, the analogy to our publicly funded healthcare system could provide a framework against which hypotheses about governance could be tested. In this model, the greatest threat to the sustainability of common pool resources is the failure to establish rules and norms for resource management [18]. These rules and norms are commonly referred to as governance [19]. In a recent systematic review of healthcare system governance frameworks [19], only a single study was found that applied the common pool resource model to analyze primary healthcare governance in low and middle-income countries [20]. In their governance framework, Abimbola et al. conceptualized governance as consisting of multiple levels: operational governance (local users and their healthcare providers), collective governance (community coalitions), and constitutional governance (governments at different levels and other distant but influential actors) [20].

The operational level of healthcare system governance in Abimbola et al. [20] refers to the day-to-day rules and norms used by local users and healthcare providers to make and implement practical decisions. Both users and healthcare providers may belong to more than one level of governance, depending on whether they act alone or collectively. Rules may be both formal and informal. Depending on the context, many factors may influence governance. For example, do users have different attitudes and perceptions about their roles in governance? What are the values, beliefs and cultures that influence the decisions that local users make about their role in the sustainability of the healthcare system?

If local users and healthcare providers establish rules and norms and there is a breach of these rules and norms, the question of patient accountability becomes relevant. To date, there is a substantial amount of literature that focuses on accountability from the perspective of the payer and provider in healthcare [21]. However, there is less known about accountability by patients. Currently, there is no definition in the literature for “patient accountability.” Editorials and commentaries on patient accountability often describe two types of patient accountability. The first type of patient accountability refers to the patient’s responsibility for management of their healthcare condition(s). The underlying assumptions for this responsibility are that the patient is well informed by their healthcare practitioners on managing their health condition(s) and is physically and mentally capable of managing their health condition(s). This can include responsibility for a patient’s healthcare before becoming ill, and illness management after diagnosis and treatment are provided. The second type of patient accountability refers to the patient’s responsibility for the use of the healthcare system, such as the responsibility to use public resources for healthcare in a manner that allows for long-term affordability, sustainability, equity and availability to all [22–24] (e.g., utilization of low-value services for end-of-life care, unnecessary diagnostic tests, and referrals; use of duplicate services and time and resources spent on frivolous complaints against organizations and providers).

There are various definitions of “accountability,” however, the simple definition is “answerability,” which is the obligation to answer questions regarding decisions and/or actions [25–27]. This definition can be extended to be inclusive of the terms of sanctions. To clearly understand accountability in any context, it is crucial to answer the questions of: ‘for what, by whom, to whom and how’ [26]. A meta-narrative review on public accountability identifies four paradigms for accountability [21]. The Institutionalist paradigm is when formal procedures and instruments and social norms in organizations and institutions are used to improve accountability. Enforcement is through verifying compliance with procedures, rules, laws, and policies. Rights-based is when accountability rests on individual human rights or entitlements. Citizens delegate power and authority to government/public sector institutions, which in turn are accountable for the realization of citizens’ rights and entitlements. For individual choice, accountability is from the client’s perspective and relies on competitive market behaviour to explain accountability relationships. Individuals, organizations, and institutions are connected by multiple accountability relationships. Actors can be account holders for some actions and account for others at the same time. The meaning of accountability is socially constructed and dependent on a given context.

Brinkerhoff et al. [25] identify three dimensions of accountability. Financial accountability is tracking and reporting on allocation, disbursement, and utilization of financial resources through auditing, budgeting, and accounting. Performance accountability is the demonstration of performance based on agreed-upon performance targets [25]. Political/democratic accountability is the institutions, procedures, and mechanisms that ensure that government delivers on electoral promises, fulfills the public trust, represents citizens’ interests and responds to societal needs and concerns [25].

Financial, performance and political accountability ensure that resources are used, and authority is exercised according to legal procedures, professional standards, and societal values. This can translate into payer accountability (where resources go); patient accountability (how resources are used); and clinical accountability by providers (how resources are used and how services are delivered, individually or in teams) [26]. Accountability is multi-directional and involves multiple combinations of actors, including providers (public and private), patients/service recipients, payers (including insurers and the legislative and executive branches of government) and regulators (governmental, professional) [26]. There are different approaches for enforcing accountability that vary from: penalties embodied in laws and regulations, the use of financial incentives/expenditures, professional codes of conduct, market mechanisms of supply and demand, public exposure or negative publicity [25] (e.g., the “naming” and “shaming” of patients as consumers who have acted inappropriately [28], the provision of performance information to payers and the public and professionalism/stewardship [26]. The degree of accountability that is valuable is debated. O’Neil [29] has argued that more accountability is not always better, and processes of holding to account can impose high costs without securing substantial benefits. In the worst situations, they can damage the performance of the very first order tasks for which they supposedly improve accountability. For this reason, profound and effective accountability must be founded on good governance and less on control, on obligations to tell the truth, and seeking intelligent accountability.

In an environment of demographic changes and fiscal constraints, there is a need to examine the approaches that can result in the more responsible use of services by consumers of healthcare. To date, no analysis has been done to explore the frameworks and definitions for patient accountability. This study aims to provide an overview of frameworks and analyze the definitions of patient accountability to identify themes and potential gaps in the literature.

Materials and methods

A scoping review is a type of literature review focusing on a topic but does not evaluate the quality of the research. This scoping review was conducted using the five-stage approach by Arksey and O’Malley: (1) developing research questions, (2) identifying relevant studies, (3) study selection, (4) charting data, (5) reporting the results [30, 31]. The optional 6^th stage of consultation was not adhered to as we did not have a clear purpose for the consultation nor the financial resources to do so. Table 1 details the process that was followed for each stage of the study.

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Table 1. Methodology guiding the scoping review.

https://doi.org/10.1371/journal.pone.0271122.t001

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Fig 1. Patient accountability flow.

From: Moher D, Liberati A, Tetzlaff J, Altman DG, The PRISMA Group (2009). Preferred Reporting Iterns for Systematic Reviews and Meta-Analyses: The PRISMA Statement. PLoS Med 6(7): e1000097. doi: 10.1371/journal.pmed1000097 For more information, visit www.prisma-statement.org.

https://doi.org/10.1371/journal.pone.0271122.g001

Results

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA-ScR) checklist for scoping reviews was used to report on the results [32]. (S3 File). 27 studies were included in the review (Fig 1).

Terms and definitions

The term ‘accountability’ [33, 34], and ‘patient accountability’ was rarely used. The most used terms include the word ‘responsibility’ [35–40]. Assessment of the definitions in the literature indicates that many studies focus on what individuals are accountable for and related consequences rather than providing explicit definitions. The term ‘accountability’ was defined in one study as expectations set by a system in which citizens or patients are held morally and legally accountable for their behaviour [33]. ‘Responsibility’ has been defined as the result of social relationships between individuals, which involves fulfilling obligations and duties [37] and distributing society’s goods and burdens [41]. Responsibility takes effect when an autonomous informed individual [37] is capable of understanding and following moral norms and rules [35] and is responsible for their actions and accountable for their conduct, choices and behaviour [35, 37]. Table 2 provides definitions for different types of responsibility.

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Table 2. Definitions of responsibility.

https://doi.org/10.1371/journal.pone.0271122.t002

Discussion

We sought to describe frameworks on patient accountability. Among the 27 articles reviewed, there was a lack of consensus on how patient accountability is defined and whether it should be defined at all. None of the literature was dedicated to the emergence of biosensor devices that could be used to objectively measure and monitor patient behaviours such as medication adherence, physical activity, or cessation of cigarette and alcohol consumption. Nor was there any mention in the literature of the potential impact precision medicine may have on tailoring treatment to predict the benefits and risks individual patients might experience more definitively. Theoretical debates focused on whether accountability should be assessed for past or future behaviour [39, 41, 42, 44, 50–52]. There was general agreement that patient autonomy about health behaviours and compliance with medical treatment and care plans should be part of a patient accountability framework [38, 39]. However, how and by whom this would be measured, monitored, and enforced was unclear. Healthcare providers were essential and pragmatic mediators of patient autonomy by monitoring patient behaviour and compliance. The literature indicated that patients are accountable to themselves, their healthcare providers and the healthcare system/society as a whole [53, 60]. Scholars have recommended that healthcare systems hold patients accountable by having patients more actively involved in their healthcare decision-making, rather than leaving the decision to physicians [61]. As a result, patients would have the added accountability of making autonomous and well-informed decisions [61].

Several studies identified incentives as potential influencers of patient accountability through either improved access or reduced costs of healthcare services [36, 44]. Patient accountability mechanisms identified included financial penalties, sanctions, taxes on unwanted behaviour, insurance premiums, lower priority on waiting lists, and denial of treatment for non-compliance. However, disincentives were seen as ethically and morally problematic unless patients were fully empowered to affect change. Most authors supported the notion that any patient accountability framework should incorporate consideration of the patients’ ability to affect their own health, whether through environmental, genetic, or socioeconomic influences, and that society must play a role in supporting the determinants of health. Furthermore, the literature did not address the legal, social, and economic costs to implement a patient accountability framework. More research is needed to determine whether these costs would outweigh the benefits of implementation or contribute to a more sustainable healthcare system.

In the healthcare system, there are some examples of patient accountability frameworks that can impede access to life-saving medical treatments [62]. Organ transplantation represents life-saving medical treatments, but due to limited organ donors [62, 63], the number of transplant applicants far exceeds the number of donors across countries [63]. In Canada, before any patient is considered for lung [64] or liver [65] transplantation, they must meet eligibility criteria that are disease-based and demonstrate the absence of absolute contraindications that include both forward and backward-looking behaviours [39, 41, 42, 44, 50]. Patients who are currently or historically non-compliant with medical treatment are excluded from being listed for lung or liver transplantation. Backward-looking non-compliance has been shown to increase the forward-looking post-transplant risk of non-compliance with anti-rejection medications, follow-up appointments, and medical advice, all of which may jeopardize the outcome of transplantation. Patients with substance misuse behaviours that include cigarette smoking or alcohol consumption are also ineligible due to concerns that potential donors might reconsider if they knew their organs might be transplanted in patients who had substance misuse behaviours.

While limited in scope, these examples demonstrate that patient accountability frameworks have been implemented in situations where there are no alternatives to these treatments, and exclusion inevitably leads to negative health outcomes. Even in the most severely limited healthcare resource situations, such as organ transplantation, the justifications provided for impeding access are not supported by the conclusions in the majority of papers in this scoping review. Some of the arguments against such a patient accountability framework include that healthcare is a human right [66], personal consequences should not be severely punitive or life-threatening [46, 50], or that the patient accountability framework is unethical [45]. The lack of public acceptability of such accountability frameworks represents another threat to their implementation. For example, there is a pending Canadian Charter of Rights and Freedom challenge regarding the constitutionality of excluding liver patients from access to transplantation based on lack of abstinence from alcohol ingestion for a period of at least six months before transplantation [67]. In some jurisdictions in Canada, this exclusion has already been reversed due to public pressure and emerging evidence that this behaviour may not be as impactful on transplant outcomes as previously believed, reinforcing the inherent uncertainty in estimating the negative health consequences of patient-modifiable behaviours.

Conclusions

From this review, it appears there is a lack of agreement on what constitutes patient accountability and how it should be implemented. The essential components of any patient accountability framework will require objective tools to measure and monitor patient behaviour and a process for reviewing compliance. Implementation will require a legal framework to administer socially and politically acceptable incentives and disincentives. Less clear is whether any of these efforts to implement a patient accountability framework in the healthcare system will improve patient outcomes or cost-effectiveness. While all the aforementioned components may be necessary to start designing a patient accountability framework, social and political acceptability may represent the most important challenge in this process. Therefore, engaging the public in an honest and open discussion about patient accountability is an essential first step.

Supporting information

Acknowledgments

We would like to acknowledge Dr. Adalsteinn Brown, Dr. John McKee, Dr. Raisa Deber and Dr. Robert Schwartz for providing their perspective and identifying key articles about the concept of patient accountability. We would like to acknowledge Ms. Camile Coles for her assistance with the search strategy.