Patient administrative burden: a scoping review

Abstract

Introduction

High administrative costs are a notable feature and frustration of the American health care system. Administrative complexity drives excess health care spending and clinician burnout. There is growing interest in patient administrative burden: the nonclinical, administrative work a patient must do to use the health care system.

Methods

Following the PRISMA-ScR framework, we conducted a scoping review to synthesize empirical evidence characterizing patient administrative burden in US health care delivery from 2002–2024 using a systematic search across 4 indexed databases. To conduct this search in the absence of standard MeSH (Medical Subject Heading) terms, we first developed a conceptual model of “patient administrative burden” to define inclusion and exclusion criteria.

Results

Sixty-three studies were identified across the patient journey: seeking care, receiving care, and following up to resolve care issues. Insurance selection, as part of care seeking, had the most mature evidence base, whereas patients’ roles in identifying and solving health system problems are especially understudied.

Conclusion

Measurement of health care administrative costs focus on clinicians and health care organizations and likely understate total costs given the in-kind work performed by patients. Improving systematic data collection and incorporating measures of patient-facing administrative work would provide a more complete accounting of administration costs.

Nonclinical patient work and access are wide-ranging concepts. Although people are casually familiar with patient administrative burden based on their own experiences using health care, the evidence base on this topic is limited. Patient administrative burden intersects with—but is distinct from—several related frameworks around administrative burden, treatment burden, and access to care. This scoping review synthesizes empirical evidence characterizing patient administrative burden in health care delivery from 2002–2024. We developed a conceptual model of patient administrative burden aiming to disambiguate our definition from—and contextualize it within—related theories, such as access to care, treatment burden, and health literacy. We define patient administrative burden as nonclinical, patient-facing administrative tasks. We frame administrative burdens as system traits rather than patient traits. We make sense of the evidence by organizing patient administrative burdens across the patient journey: seeking care, receiving care, and following up to resolve care issues.

Introduction

High administrative costs are a prominent feature and frustration of the American health care system.¹ Administrative complexity drives excess health care spending and clinician burnout.^2,3 Research into administrative costs in health care has largely focused on payer and provider-facing costs as opposed to those costs borne by patients seeking care.² Administrative burdens, broadly defined as “an individual's experience of a policy implementation as onerous,” exist across a variety of fields, including public policy and health care.⁴ Consequences of administrative burden are an area of burgeoning policy and research interest.^5,6

Patient administrative burdens are no accident; rather, they emanate from intentional choices of policy design, in turn shaping access to care. These political and policy choices include the decision whether to rely on a private insurance system reliant on utilization management, the decision whether to fragment America's health care delivery, to choices about health insurance enrollment processes and their associated complexity. At each step—from enrollment to utilization to dispute resolution—the uniquely American patient experience is one that can be rife with administrative burden.

Patient administrative burden is consequential because it can affect timely access to care, which has been a longstanding policy priority in the United States.⁷ Indeed, Herd and coauthors⁸ found that “burdens can be so large that reducing them can have just as large an impact as expanding eligibility for a program,” making it all the more important to understand the many facets of administrative burden that patients in the American health care system experience when seeking care, and how it can undercut patients’ access to necessary medical care, even leading to treatment abandonment.

Comparatively little empirical research has examined the administrative work a patient must do to engage with the American health care system, from identifying and enrolling in insurance to resolving billing disputes and coordinating care between providers. One national survey found that nearly 25% of insured adults in the United States report delaying or foregoing care due to administrative tasks, an impact comparable to that from financial barriers.⁹

Research on patient-facing administrative burdens in the health care system is limited and fragmented across academic disciplines (eg, behavioral economics,^10-12 public administration^13,14) and concepts (eg, enrollment complexity,^15,16 utilization management in insurance^17,18). It is thus valuable to synthesize these divergent strands of scholarship to not only appreciate the breadth and depth of available evidence in a manner that overcomes these silos, but also to highlight opportunities to advance the field.

This review assesses the empirical evidence characterizing patient administrative burden and related concepts across the clinical, health services, and social science literatures. We aggregate existing evidence with the aims of summarizing the current base of knowledge and articulating gaps and opportunities for this research agenda going forward, addressing content gaps, methodological gaps, and opportunities for conceptual alignment across adjacent terms such as care access and treatment burden. This review aims to serve as a springboard for further research into patient administrative work and nonfinancial barriers (as distinct from challenges such as high levels of cost-sharing), with the ultimate goal of driving health system delivery innovations to provide timely, equitable, and accessible care for patients.

Data and methods

We used the Arksey and O’Malley 5-stage framework for scoping reviews and followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses–Extension for Scoping Reviews (PRISMA-ScR) guidelines.^19,20

Stage 1: identifying the research question

The research question motivating this study was as follows: What is the state of empirical evidence of patient-facing administrative burden in the American health care system? In answering this question, our goal was to bring together related and relevant concepts across literatures and disciplines to paint a comprehensive portrait of patient administrative burden.

Patient administrative burden is a new concept lacking MeSH (Medical Subject Heading) terms or common language across studies. For this reason, we developed a conceptual framework of patient administrative burden to define the boundaries of our search and provide a practical guide for practitioners and researchers. Nonclinical patient work and access are wide-ranging concepts. Although people are casually familiar with patient administrative burden based on their own experiences using health care, the evidence base on this topic is limited. Patient administrative burden intersects with—but is distinct from—several related frameworks around administrative burden, treatment burden, and access to care.

Defining patient administrative burden

We define patient administrative burden using the Herd and Moynihan framework. Originating in public administration, the Herd and Moynihan articulation of administrative burden has become influential across fields.^9,21,22 They conceptualize administrative burden as comprising 3 distinct, but overlapping, types of costs: learning, compliance, and psychological.⁴ Learning costs entail (in the health care setting) learning about a health benefit and one's eligibility. Compliance costs entail the processes of utilizing the benefit, such as making the required phone calls or filling out the required documentation. Psychological costs entail the stress, anxiety, or loss of autonomy that emanates from this health care system navigation. As patients seek and receive medical care, they encounter multiple opportunities to incur each of these 3 facets of administrative burden.

Within each of these 3 dimensions of administrative burden, there are reflections of policy choices about health care delivery in the setting of growing privatization. The complex and fragmented health care landscape amplifies patients’ learning costs at each stage of seeking and receiving care given the absence of centralized payment and reliance on private markets. Patients are tasked with learning health insurance complexities and being a “smart shopper,” despite the reality of limited health insurance literacy among the general public. Patients must additionally face compliance costs resulting from policy choices ranging from Health Insurance Portability and Accountability Act (HIPAA) documentation, billing documentation, and fragmentation between health organizations that, in turn, imposes on patients the task of coordinating care among multiple entities. And these combined features drive navigation anxiety emanating from this constellation of policy choice that—collectively—constitutes the American exceptionalism of patient administrative burden.

Using the Herd and Moynihan definition of administrative burden—wherein users experience policy implementation as onerous—we locate patient administrative burden as a discrete concept within a range of intersecting literatures, distinguish it from related or overlapping definitions, and articulate how it links to these connected concepts. We use this framework provide a summary of evidence on patient administrative burden intuitively organized along the patient’s journey, as well as discuss the quality of current evidence, gaps, and opportunities.

Patient administrative burden in health disciplines

Patient experience, patient engagement, access to care, and patient-centered care are prominent themes in clinical and health services research that may intersect with patient administrative burden. To make our search tractable across very large literatures, our search included terms such as “non-financial barrier,” “insurance complexity,” and “treatment burden.” We used terms such as “patient,” “population,” and “consumer” to capture the people interacting with health care. Patient navigation focuses on workarounds rather than tackling policies that drive patient burden, we included “navigation” as a search term given the correlation between navigation efforts with administrative burdens. In the past decade, treatment burden has emerged as a theory capturing the cumulative work of being a patient, including both clinical and nonclinical work, and we thus included “treatment burden” among our search terms.^23-25 A key insight of treatment burden is that it acknowledges that being a patient can be difficult—that engaging patients in health care is not necessarily uniformly positive from the patient’s perspective. While treatment burden is sensitive to the system features that burden patients, it is broader than administrative burden in that it additionally emphasizes clinical care and self-management. Finally, patient administrative burden often invokes concepts such as health literacy or health insurance literacy, but we did not include these terms because literacy is oriented around a patient’s capabilities rather than the system features central to the policy-driven lens of patient administrative burden.²⁶

Patient administrative burden in other social science disciplines

Public administration focuses on the politics and consequences of using administrative burdens to implement policy.^14,21 In public administration, administrative burden theorizes interactions between citizens and the state. American health care involves a multiplicity of nonstate, private actors (eg, private health insurers, hospitals), which deviates from the citizen-state paradigm. However, health care is considered (at least to some degree) an essential service and is heavily financed and regulated by the government, making it a logical setting to extend this concept of administrative burden to patients and health care services.²⁷ We included “administrative burden” as a search term.

Other social science disciplines have conceptions of patients/customers/clients/end-users that have been applied in health care contexts. In economics, the concepts of “frictions” and “ordeals” characterize both intentional design features and unintended consequences of policies and public service delivery.^28,29 Behavioral economics has extensively examined the relationship between consumer choice and design and take-up of health insurance.^10,12,30 We captured the economics literature through terms such as “administrative hassle” and “insurance choice.” In management, co-production is a concept used to describe end-user participation in service delivery, including health care. However, in contrast to administrative burden, co-production is conceived only as a value-creating action and thus not concordant with our conceptualization of patient administrative burden.^31,32

Defining patient administrative burden inclusion/exclusion criteria

Looking across the range of citizen/customer/patient-facing research, we used 3 criteria to establish our definition of patient administrative burden, as follows:

1. First, we included only nonclinical, administrative tasks, excluding quantifications of clinically oriented self-management (eg, self-administering a medication).

2. Second, we excluded time costs (eg, traveling to appointment, waiting to see provider, active treatment, etc), which are consequential but broad enough to warrant a distinct appraisal in how time is measured and interpreted.

3. Third, we conceptualized administrative burden in terms of system traits (eg, processes to obtain care) rather than patient traits (eg, health literacy), aiming to align research on patient administrative burden with actionable organizational targets for improvement. That is, while health literacy is highly variable and difficult to quantify, even knowledgeable patients may struggle to identify a physician and access care in a system rife with red tape.

Our patient administrative burden framework centers discussion of burdens on the impacts of our health care delivery system on patients, as opposed to other conceptualizations of access that include many patient-centric barriers to care. There are many factors that impact a patient's ability to cope with and overcome administrative burdens to receive medical care, such as health literacy and language discordance. We consider these to be patient-centric mediators or moderators, which may shape a patient's experience of health care and administrative burden but are not considered administrative burdens themselves. For example, health literacy is a quality that a patient possesses, but patient–provider coordination and accessible documentation is a system issue and is actionable at that level.

Stage 2: identifying relevant studies

Our team included a research librarian who translated our definition of patient administrative burden into a set of key words and phrases (Appendix Table A1). On August 11, 2022, we searched the following indexed databases: Medline (Ovid), Embase (Elsevier), CINAHL Complete (Ebsco), and Web of Science Core Collection (Clarivate). On November 10, 2022, and again on July 8, 2024, we repeated this search with adjusted terminology to capture any new studies and then ran a citation search from a set of articles identified in the first extraction using Web of Science (Clarivate) (Appendix Tables A2 and A3).

Prior to screening, we developed inclusion and exclusion criteria (Appendix B). We included only English-language articles published from 2002 through July 2024. We included only original research studies, excluding commentaries or reviews that did not report new data. Given the unique administrative features of the American health care system, we restricted studies to US settings. We required that studies address patient-facing administrative burdens, excluding those focused only on health professionals/organizations and those focused only on financial burdens. Finally, we included studies of adults aged 18 years and older as we sought to distinguish patient-facing burdens from the wider scope of caregiving.

Stage 3: study selection

One author (C.G.W.) removed duplicate records using Deduklik and imported exported search results into Covidence (www.covidence.org), and 2 authors (M.A.K., K.Y.F.) independently screened articles by title and abstract review; they were blinded to the other's decisions until all reviews were complete. Studies that could not clearly be excluded by title and abstract alone were advanced to the second-stage, full-text review. Articles selected for full-text screening were independently reviewed by 2 authors (M.A.K., K.Y.F) for meeting the full inclusion and exclusion criteria. When disagreements in article classifications arose, consensus was reached through discussion. After completing the initial 2-stage screening process, we re-ran the same search to capture any interim publications and added articles from the citation search. These additional records were added to Covidence, de-duplicated, and reviewed following the same procedures.

Stage 4: charting the data

We exported the final sample of extracted articles to Zotero for analysis. We used thematic analysis including both a priori and emergent themes.³³ We described articles according to research method, population studied, and type of administrative work reported. Our a priori themes were drawn from our own conceptual framework and theoretical concepts in the literature. Two authors (M.A.K., K.Y.F.) met at least weekly during analysis to discuss findings and reach consensus.

Stage 5: collating, summarizing, and reporting results

We summarized studies by journal discipline, method, and study population. We organized studies thematically.

Results

Database searching retrieved 8153 articles and 213 articles in the subsequent citation-based search. We reviewed 7779 records during title and abstract screening, advancing 295 records to be assessed for eligibility via full-text screening. Full-text screening eliminated a further 232 studies overall, resulting in a final sample of 63 studies (Figure 1).

Figure 1.

PRISMA-ScR flow diagram. Source: Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71. doi: 10.1136/bmj.n71. For more information, see http://www.prisma-statement.org/. Abbreviation: PRISMA-ScR, Preferred Reporting Items for Systematic Reviews and Meta-Analyses–Extension for Scoping Reviews.

Of the 63 studies included in our review, 35 (56%) were published in health services research journals. Additionally represented were clinical journals (medicine, nursing), as well as journals in economics, public policy, management, and psychology (Table 1). Surveys were the best-represented method (n = 27, 43%), followed by qualitative studies (27%); the remainder consisted of quantitative, experimental, audit (a.k.a. secret shopper), and multiple-methods studies.

Table 1.

Characteristics of included studies.

Study characteristics	No. of studies (%)
Publication year
2000–2010	7 (11)
2011–2015	13 (21)
2016–2020	20 (32)
2021–2024	23 (36)
Journal discipline
Health services research	35 (56)
Clinicala	20 (32)
Economics	3 (5)
Policy	2 (3)
Management	1 (1)
Psychology	1 (1)
Preprint or white paper	1 (1)
Method
Survey	27 (43)
Qualitative	17 (27)
Experimental/RCT	5 (8)
Quantitative	5 (8)
Audit	3 (5)
Multiple methods	6 (9)
Phase of care addressedb
Seeking	24 (38)
Receiving	43 (68)
Resolving	31 (49)

Numbers may not sum to 100% due to rounding.

^aClinial disciplines: medicine, nursing, social work, pharmacy.

^bNot mutually exclusive categories^1-20,23,26; studies may address multiple phases of car.

Abbreviation: RCT, randomized controlled trial.

Our a priori themes were learning, compliance, and psychological costs. The emergent themes around which we organized our results were the chronological phases of the patient journey: seeking care, receiving care, and resolving care issues. The conceptual framework guiding our search began by describing how patients access health care and mapping as many potentially relevant literatures as possible to that interaction—and crucially, distinguished mediators of patient administrative burden that were not part of our search. Our final conceptual framework formalized our initial linear structure (Figure 2).

Figure 2.

Conceptual framework of patient administrative burden. Source: Authors’ analysis.

Phases of the patient journey

We mapped cross-cutting literatures and frameworks relevant to patient administrative burden onto the chronological patient journey. We divided the identified administrative tasks into 1 of 3 phases according to a typical patient's journey in utilizing health care services: “seeking coverage or care,” which encompasses the activities necessary prior to any clinic or health care visit; “receiving care,” which includes all activities related to the physical act of arranging and receiving care; and all later activities that would typically occur after a specific instance of care we grouped as “resolving care-related issues” (Appendix C, Table A4). We acknowledge that categorical boundaries are not rigid (and can become recursive). Nested within each phase are learning, compliance, and psychological costs. We organized patient administrative burden chronologically because following the patient journey is (1) intuitive across literatures and disciplines, (2) reveals areas of health care delivery/policy where empirical evidence of patient administrative burden is sparse, and (3) uncovers opportunities for intervention/remediation. Figure 3 illustrates the intersection of administrative burden costs with phases of care using exemplar studies.

Figure 3.

Exemplar studies showing the intersection of administrative burden costs and phases of the patient care journey. The Herd and Moynihan administrative burden framework defines learning, compliance, and psychological costs of administrative burden. The authors identified seeking, receiving, and resolving care issues as 3 phases of the patient journey. The figure shows exemplar studies to illustrate each administrative burden cost across the 3 phases of the patient journey. See Appendix Table A4 for a full list of studies reviewed.

Administrative burdens in seeking care

We classified administrative tasks primarily present in the beginning of a patient's journey as the “seeking care” phase, which we defined as prior to receiving or arranging any medical care. In the US health care system, these activities predominantly revolve around insurance, as having medical coverage is typically a precursor or necessity to be able to engage successfully and consistently with care. The bulk of tasks in this phase involved learning about insurance and enrolling in insurance plans or other public health care programs.

The care-seeking literature was the most mature of the 3 phases. Although fewer studies focused on care-seeking (n = 24, 38%), it included the largest number of quantitative and experimental studies measuring administrative burdens related to benefit design and insurance selection. Qualitative and survey studies corroborated quantitative findings.

There is a substantial body of scholarly work focused on the barriers regarding insurance comprehension and choice selection, particularly among commercial insurance and Medicare users, as well as administrative activities required to enroll in government insurance programs such as Medicaid and Veterans Health Administration programs. Overall, studies of consumer insurance understanding reveal that many individuals are unable to select the most optimal plan for their circumstances, often termed the “dominant choice” in economics and choice selection studies.^{10,11,15,34-37} This can reflect not only low patient knowledge but also a complex information environment in which there may be a substantial number of plans to compare. Relatedly, consumers struggle to understand insurance concepts such as deductible and co-payment, which are important to assessing whether a plan meets one's needs.^38-40 In public programs, there is documented difficulty navigating enrollment and eligibility criteria and paperwork.^16,41-43 Insurance selection is a complex choice environment replete with technical jargon, both of which contribute to patient administrative burden. Learning costs were an especially prominent feature of patient administrative burden in the care-seeking phase.

Administrative burdens in receiving care

In the second phase of a patient's journey, we identified studies of administrative tasks on topics such as medical appointment scheduling or learning about medical diagnoses and treatments. These tasks we grouped together as part of a patient's journey in “receiving care,” as they are often involved in the specific act of visiting a health care professional or clinical care center.

Although 68% (n = 43) of studies addressed some aspect of receiving health care, the evidence characterizing this phase of care was less mature than that examining care-seeking. With few exceptions, the majority of the studies in this phase rely on nonvalidated surveys or other qualitative designs, such as focus groups or interviews, to elucidate patient barriers to care. Most of these studies—including validated instruments—were not focused solely on administrative tasks but rather broader examinations of access to care and patient experience, and typically only 1 or a few of the surveyed activities could be classified as administrative tasks.^44-46

The receiving care phase includes difficulties that patients experience in using their insurance coverage once enrolled. Administrative tasks in this domain ranged from understanding their insurance coverage and estimating out-of-pocket costs, to identifying in-network and available providers, to obtaining prior authorizations.^47-51 These tasks amplify the learning costs that patients take on when seeking to understand and access their benefits, as well as compliance costs associated with accessing care and using coverage “correctly.” Scheduling appointments poses another significant administrative burden for patients.⁵² Several surveys of patients report difficulty making timely appointments or receiving care, especially between appointments or after hours. Within this area, a small number of secret-shopper studies have demonstrated the difficulties patients face when trying to find and establish care with a new provider, with estimates of more than 70% of calls in 1 study resulting in failure to establish a primary care new patient or urgent care appointment.^47,48,53-55 Many of the studies in this area address both the difficulty of getting to see a doctor, as well as the difficulties in receiving medical care or advice outside of clinic business hours. Thus, while the act of scheduling medical appointments is an expected task in health care utilization, many studies lay bare the amplification of compliance costs associated with seeking care—costs that can, in turn, perpetuate psychological costs.

Administrative burdens in resolving care issues

After a patient has both sought and received care, there are additional administrative activities in the resolution of any care issues. Of the 3 phases, this was the least mature area of literature, with a paucity of rigorous and systematic evidence documenting causes or consequences of the patient role in addressing organizational errors or gaps in care. Growing attention to coverage denials and utilization management was reflected in this category, with half of the studies in 2023–2024 addressing these challenges in some way.

A commonly reported administrative burden was understanding, disputing, or adjusting medical bills after care was rendered.^17,56,57 Many surveys and qualitative studies highlight the scope of insurance- and payment-related administrative activities, from resolving billing disputes to appealing denials of benefits or prior authorizations.^9,17,51 In light of the notably expensive nature of American health care delivery, high degrees of learning and compliance costs associated with resolving billing concerns can pose pronounced stressors for patients, such that all 3 dimensions of burden come into clear view. However, only a minority of studies focused on quantifying the frequency and impacts of such administrative work on delays in medical care.^9,58

In addition to billing issues, several qualitative and survey studies reported patient administrative burdens related to coordinating care between physicians or health centers, such as compliance costs associated with obtaining and transmitting paperwork.⁵⁹ Several qualitative and survey studies detailed the difficulties that patients experience in following up test results or medical records and coordinating care among multiple physicians’ offices.^58,60-63 An audit study assessing hospital compliance with requirements for releasing medical records corroborated these results, finding that patients were frequently given conflicting instructions (eg, website vs phone) for how to submit records requests.⁶⁴

Discussion

This scoping review synthesizes empirical evidence characterizing patient administrative burden in health care delivery. To guide our analysis, we developed a conceptual model of patient administrative burden aiming to disambiguate our definition from—and contextualize it within—related theories such as access to care, treatment burden, and health literacy. We defined patient administrative burden as nonclinical, patient-facing administrative tasks. We further defined patient administrative burdens as system traits rather than patient traits. We made sense of the evidence by organizing patient administrative burdens across the patient journey: seeking care, receiving care, and following up to resolve care issues.

The large number of results returned by our search terms highlights the emergent nature of patient administrative burden. We used broad search terms to cast as wide a net as feasible. Many results were plainly irrelevant (eg, trial protocols). A large share of results was topically relevant but out of scope: many studies were commentaries or patient accounts without primary research, or mentioned administrative burdens in the discussion section but did not directly study them. Although these accounts were out of scope, recurring mention of patient work and its impositions underscored the need for empirical examinations of patient administrative burden.

Developing a tractable and parsimonious definition of patient administrative burden required tradeoffs. Given the prevalence and relevance of patient administrative burden to so many aspects of health care, we wanted to avoid constructing a definition so broad as to dilute the emphasis on what we view as the key contribution of patient administrative burden: focusing on systemic, policy-driven causes of burdensome service delivery. We centered Herd and Moynihan's framing of administrative burden as “the experience of a policy implementation as onerous” throughout our conceptualization of patient administrative burden and literature review. We were intentional in defining patient administrative burden in terms of health system features rather than patient features so our definition would align with solutions based on policy change (government and/or organizational) rather than modifying individual behavior. We defined critical drivers of patient administrative burden—such as health literacy and stigma—as mediators/moderators because those individual characteristics can worsen or attenuate burden. We note that stigmatized services, such as reproductive health care, may be subject to policy-driven burdens, and that is a topic worthy of a study in its own right.

In the current landscape, the public policy literature on administrative burden is the most aligned with patient administrative burden in theory and application, although health care service delivery has relational (clinician–patient) and organizational (not direct government service) dimensions beyond the citizen–state paradigm.^4,14 Within health care research, the theory of treatment burden is closely aligned with patient administrative burden in its appraisal of the patient role in service delivery and the burdens placed on patients.^23,65 Studies examining health care “hassles” and nonfinancial barriers to access that include patient administrative burden but composite measures make it challenging to isolate process failures.^45,46,66,67 Isolating patient administrative burden as a distinct phenomenon is an opportunity across clinical contexts and patient populations. Focusing on patient administrative burden enlarges the attention on the bureaucratic aspects of health system interaction.

We did not exclude studies with particular methodological approaches and did not assess study quality when determining inclusion in the review. This flexibility was motivated by our desire to cast as wide a net as possible. We encountered extensive gaps in data, quality, and study design. In contrast to the study of financial costs, the study of patient administrative burden has been hampered by a lack of variables in commonly used data sources, such as claims or federal survey instruments. Qualitative studies and study-specific surveys tried to fill that void but had limitations. Sampling strategies are a key limitation; investigator-driven projects cannot match the resources and scope of more systematic data collection programs. Interview guides and survey instruments addressing administrative burden usually did so in the context of a broader array of topics, which meant that patient administrative burden findings were very limited or rolled into composite measures that do not isolate specific problems (or their solutions). The quality of evidence was strongest for patient administrative burden in care-seeking, owing to overlaps with economics and health services research literatures examining insurance, benefit design, and patient choice. The quality of evidence for using care and resolving care issues was weakest; these are areas warranting particular attention in future research.

Limitations

Patient administrative burden is a new concept that is present in diffuse literatures; defining parameters for a scoping review is necessarily subjective and open to interpretation. The subjectivity of scoping reviews means that our search parameters and interpretation of the literature may be incomplete or justifiably contested. Our conceptualization of patient administrative burden is an initial framework that may benefit from further refinement, including our definition of patient administrative burden and selection of search terms. This work represents an initial synthesis aimed at facilitating future inquiry, which should include more standardized and systematic appraisals.

The breadth of our search introduces several limitations. We excluded studies focused on caregivers, children, and those outside of the US context. The role and experiences of caregivers—both family and professional—in patient administrative burden are large enough to merit a study of their own. Similarly, our search intersected with a large literature on pediatrics and young adults, including caregiver–child dyads and a larger literature on adolescents/young adults and their transition from pediatric to adult care systems, and the disparate impact of administrative burdens on marginalized patients. Finally, while American health care policy introduces unique administrative burdens, all health care systems must contend with rapidly expanding scientific knowledge and the complexity it introduces.

Future directions

Administrative burden is highly salient to patients’ everyday encounters navigating the American health care system. The “time tax” and other hassles can make it prohibitively onerous for many patients to access the health care they require, and thus it is vital to understand both the scope of this burden as well as mitigation strategies. Improving systematic data collection and measurement is essential to supporting further research. In particular, the quality of evidence is most robust for care-seeking, so research and data collection should focus on patient administrative burden related to receiving care and resolving care issues. The role of patients in identifying and solving problems is especially understudied.

Herd and Moynihan's characterization of the 3 components of administrative burden—learning costs, compliance costs, and psychological costs—provides a framework for understanding the results retrieved through this review.⁴ Learning is a central task in care-seeking. Compliance costs, such as completing paperwork or submitting work requirement documentation, are also present in the evidence characterizing patient administrative burden. The psychological costs of patient administrative burden are a recurring theme in qualitative studies, but there is little systematic evidence characterizing this aspect of patient burden, although there is value to better crystalizing the extent of this cost to patients. Further, studies analyzed did not offer a direct comparison of patient burden in public and private health insurance programs (eg, original Medicare vs Medicare Advantage), although this would be a valuable extension of these findings, especially given seniors’ ability to choose between models of insurance delivery.

The measurement of health care administrative costs focuses on clinicians and health care organizations and likely understates total costs given the in-kind work performed by patients. Incorporating measures of patient-facing administrative work would provide a more complete accounting of administration costs. This would be an indicator worthy of comparative analyses across organizations and health systems.

The ultimate goal is to reduce patient administrative burden, within which there is an important knowledge gap in empirically understanding what constitutes a burden and for whom. There are global opportunities to reduce administrative burden for all patients—for example, increasing standardization of terminology, processes, policies, and forms. These global opportunities reflect experiences that are universally burdensome—for example, correcting documentation errors. There are additional opportunities to identify and reduce areas of disparate burden. There are administrative tasks that may be straightforward for some patients but prohibitive for others (eg, talking on the phone during work hours). Thus it is a priority to reduce administrative burden in the design and delivery of care for socially and/or medically vulnerable populations), as well as improving recognition of, and support for, patients in “general” care with mediating characteristics (eg, language) that impose administrative burdens above and beyond the typical service user.

Supplementary material

Supplementary material is available at Health Affairs Scholar online.

Funding

M.A.K. was supported by the National Cancer Institute (R00CA277367).