Rethinking Universal Health Coverage: A qualitative study of patient organisation perspectives on the Turkish health-care system
Abstract
Universal health coverage (UHC) has been elevated to the status of a global policy target, but this was at the expense of losing its aspirational meaning. As a case in point, Turkey has been one of the countries that has achieved UHC, according to the technocratic definition. This article employs a combination of deductive and inductive thematic analysis methods to explore patient organisation (PO) perspectives on the Turkish health-care system based on 26 respondent interviews from 19 POs in Istanbul. Highlighting the inadequacy of the technocratic definition of UHC, the article maintains that an analysis of PO perspectives opens the way for a nuanced and bottom-up assessment of essential service coverage and financial protection by identifying elusive gaps in both dimensions that would otherwise be lost in generalist evaluations. The findings also underline the importance of keeping intact the UHC’s aspirational element to enable POs to participate in the politics of priority setting in health care.
INTRODUCTION
Universal health coverage (UHC) has become a global policy target as a result of the 2015 United Nations (UN) Sustainable Development Goals (SDGs). The World Health Organization (WHO) offers an aspirational definition of UHC as a system where ‘all people have access to the health services they need, when and where they need them, without financial hardship’ (WHO, 2020a). The SDG indicators for assessing progress towards UHC, however, adopt a technocratic definition. These indicators are coverage of essential services and the proportion of the population with catastrophic health-care expenditures (UN, 2020). The UHC index, which is based on these indicators, uses service coverage (estimated by the inclusion of selected preventions and treatments) and equal-weighted scores on financial protection (estimated by the prevalence of catastrophic health expenditures) to evaluate the progress of countries towards UHC (Wagstaff & Neelsen, 2020).
The disconnect between the aspirational and technocratic definitions of UHC is stark. While the former offers a dynamic political ideal that countries can aspire to achieve and that health movements can deploy for purposes of advocacy, the latter turns UHC into a policy objective that is static and limited, yet possibly achievable. The technocratic definition of UHC has two major advantages over the aspirational definition. It facilitates evidence-based priority setting for health-care systems (Campbell et al., 2013; Wirtz et al., 2017) and promotes a holistic and population-level approach to monitor progress towards UHC (Kutzin, 2013). While these qualities make the technocratic definition more convenient in tracking UHC progress across the world, they also restrict the relevance of the UHC for health movements and risk depoliticising the process of achieving UHC at the country level. In contrast, the aspirational definition enables us to consider the process of achieving UHC ‘a value-laden political process’, in which ‘stakeholders often justifiably disagree’ about the technical criteria underlying priority setting in health care (Baltussen et al., 2016: 615) and should be continuously engaged in ‘identifying gaps in the various interactive UHC dimensions’ (Abiiro & De Allegri, 2015: 5).
Patient organisations (PO), as one of the key stakeholders in these processes, are strategically situated in health-care systems, enabling them to instantiate the gap between aspirational and technocratic definitions of UHC. POs, because of their close relationships with patients, have first-hand experience with service shortages and coverage gaps. Examining their unique perspectives is thus a valuable endeavour. Two decades after the publication of Wood’s (2000: 5) influential book on patient power, the literature on POs is emerging, but POs are still largely ‘hidden species’.
It is in this framework that the present study explores PO perspectives on a health-care system in an upper-middle country that, according to the technocratic definition, has achieved UHC (Atun et al., 2013; World Bank (WB) 2018). This article maintains that PO perspectives make possible a multi-faceted examination of the health-care system and provide a unique critique of the technocratic definition of UHC.
LITERATURE REVIEW
Previous literature has introduced the notions of biological citizenship (Petryna, 2002; Rose & Novas, 2005) and therapeutic citizenship (Nguyen et al., 2007) to underline the increased role of medical conditions in defining group and individual identities that are mobilised to claim not only access to health care but also broader welfare entitlements. Alternatively, Rhodes et al., (2013) use the concept of patient citizenship to describe how the interaction of therapeutic relationships shape patient subjectivities and distinguish deserving from undeserving patients. Extending this framework to address the relationship between patients and the state, Paparini and Rhodes (2016: 513) suggest that ‘emerging forms of patient citizenship linked to care and pharmaceutical demands would be greatly relevant in the context of competition for public funding and expenditures’.
Patient organisations are one of the institutional manifestations of patient citizenship. The history of POs in Western countries dates back to the 1940s (Rabeharisoa, 2006), and a significant increase in their numbers was observed in the United States and the United Kingdom in the 1970s (Wood, 2000). The PO landscape is typically characterised by diverse organisational structures and objectives, fragmentation in these organisations and relative weakness compared with other actors in health-care politics (Baggott et al., 2014; Baggott & Jones, 2014; Rose & Novas, 2005). Baggott and Jones (2011: 530) define health consumer and patient organisations (HCPO) as ‘voluntary sector organisations that seek to promote and/or represent the interests of patients, users, carers and the wider public in the health policy arena’. Following the self-definition of Turkish organisations, PO is used throughout this article instead of HCPO.
Rabeharisoa (2006) states that POs have three distinctive characteristics: They foster a collective identity of patients with specific diseases, they function as a clearinghouse for patients’ experiential knowledge of their specific diseases and they see themselves as having a political role. First, Peeters et al., (2014) note that POs reinforce collective identity among patients. Wood (2000) suggests that the collective identity that POs foster among patients can be treated as the ‘political resources’ that they can deploy to empower the patient vis-à-vis professionals, providers and payers.
Second, the clearinghouse role of POs is often discussed in reference to Borkman’s (1976) concept of experiential knowledge (Caron-Flinterman et al., 2005), which is used to describe the knowledge that patients possess about their disease and being a client in a specific health-care system. Although the experiential knowledge of disparate individuals cannot easily turn into coherent narratives, POs can transform patients’ experiential knowledge into an organisation's experiential expertise (Rabeharisoa & O’Donovan, 2014).
Third, the political role of POs, which is closely related to the two other characteristics, has also attracted scholarly attention. Wood (2000: 183) maintains that POs offer a ‘voice to the disadvantaged,’ as they represent patients with diverse medical conditions whose experiences are overlooked in policymaking. Along the same lines, Baggott and Jones (2014) underline the political motivations for establishing POs, noting that they are often responses to an unmet need or a grievance. More broadly, Landzelius (2006: 536) suggests that POs may symbolise a change in patienthood from ‘a site for affliction, treatment and research’ to a gateway for claiming rights. In addition, Peeters et al., (2014) maintain that POs can have external effects such as improved awareness among other actors and increased participation in policymaking.
The representativeness of POs was also examined in the literature to assess its democratic contribution to health-care policymaking. In a study on rare-disease organisations in Austria, Germany and The Netherlands—countries with formal patient representation mechanisms through POs—Fischer and van de Bovenkamp (2019) find that rare-disease POs rely primarily on informal authorisation and accountability mechanisms to strengthen their claims of democratic representation. In a study on rare-disease organisations in France, Huyard (2009) identifies two types of PO—pluralistic and monistic—based on how inclusive their internal decision-making is of various stakeholders and concludes that focusing merely on the internal decision-making structures of POs is unhelpful in understanding their actions. Baggott and Jones (2018) also offer a word of caution on the emphasis on the formalistic representativeness of POs in the literature, because it can lead to an insufficient understanding of their unique perspective. Finally, van de Bovenkamp and Vollaard (2018: 366) argue that ‘no one voice can claim to represent all patients’, and they embrace the unique contribution that POs can make in representing patients.
The benefits of relying on PO perspectives to examine a health-care system and its UHC progress are threefold. First, it is a gateway to obtain data on patient experiences with the health-care system across disease constituencies. Second, it offers us a contextual account of the health-care system. Baggott and Jones (2015) emphasise that the health-care system in which a PO operates has a significant influence on its perspectives and actions, so it stands to reason that a contextual analysis of POs can make a valuable contribution to the literature (Baggott & Jones, 2014). Third, based on their privileged epistemological position in reference to their closeness to the experiences of patients with various health conditions and their understanding of the health-care system context, POs turn the experiential knowledge of patients into experiential expertise and patient citizenship claims. This article treats PO perspectives as a partial reflection of this expertise and uses them as an entry point into a nuanced and bottom-up examination of a health-care system and its UHC progress. Inspired by this research agenda, this article offers a contextual analysis of PO perspectives on the Turkish health-care system.
THE TURKISH HEALTH-CARE SYSTEM
Turkey is classified as an upper–middle-income country with a relatively high level of income inequality (WB, 2020a). The Turkish health-care system was established on an occupationally organised social health insurance (SHI) model and a public sector capacity in provision in the 1940s. Coverage gaps, informal payments, inegalitarian benefits and fragmented service provision structures, combined with political factors, paved the way for the launch of the 2003 reform. This reform, which was ‘ex post facto rebranded’ as a UHC reform (Agartan, 2020), introduced a compulsory SHI scheme that equalised benefit packages for all. Following the reform, the Turkish health-care system was declared to have achieved UHC (Atun et al., 2013; WB, 2018), which ranks as one of the top performers in both UHC indicators, essential service coverage and financial protection (WHO, 2020b).
The Turkish strategy for achieving UHC was distinctive in that it combined universalism in financing with marketisation in provision (Agartan, 2012). The reform kept the dominant role of the public sector in financing and eliminated the previous form of informal payments (Ökem & Çakar, 2015). At the same time, it introduced flat-rate co-payments for hospital visits and floating co-payments for medications. As for provision, this was transformed into a competitive and—at least in theory—a patient-controlled internal market that includes both public and private providers. The reform promised citizens that they would not be passive clients within a system of state provision—in the words of Saunders (1986)—and popularised patients’ right to choose their provider (Guven & Sert, 2010). Over time, the number of private hospitals increased, along with their capacity, and started to serve patients with SHI in return for floating co-insurance. Since 2010, patients have been exempt from paying a co-insurance for the following services from private and public institutions alike: emergency services (ER), intensive care, burn injury treatment, cancer treatment, neonatal care, surgical operations for congenital anomalies, haemodialysis, cardiovascular surgical operations (with certain restrictions) and cochlear implant operations.
Formal representation by POs, which is common in SHI health-care systems (Rojatz & Forster, 2017), is absent in Turkey, but there are administrative channels for individual complaints. Turkey issued a patient rights by-law five years before the reform (The Republic of Turkey, 1998), which led to the establishment of patient rights units at the hospital level (The Republic of Turkey, 2003). These units received around 80,000 patient complaints in 2019 (The Ministry of Health, 2020). Another administrative channel for patient complaints is The Ministry of Health's Communication Centre (SABIM), which was founded one year after the 2003 reform. SABIM received 2 million complaints per year in a country with a population of 82 million (The Ministry of Health, 2020). Although patient complaints could be used to examine the shortcomings in the Turkish health-care system, these data are not publicly available. To compensate for this deficiency, this article uses PO perspectives as a proxy for patient experiences with the health-care system.
Patient organisations are relative newcomers to the voluntary sector landscape in Turkey. Only, a few POs existed before the 2003 reform, but they have increased in both number and diversity, particularly since the 2010s. Turkey's contemporary PO landscape is marked by diversity and dynamism, which represents an untapped potential for bottom-up examination of the health-care system and emerging forms of patient citizenship.
MATERIALS AND METHODS
The article is a qualitative exploratory study on the PO perspectives of the Turkish health-care system. Semi-structured in-depth interviews were conducted face-to-face with 26 respondents from 19 Istanbul-based POs between January and mid-March 2020. The interviews were conducted in Turkish. The respondents were informed that the interview would elicit their insights into the functioning of the health-care system in terms of how it affects their respective patient groups. The interviews lasted an average of 40 minutes and were audio-recorded with the informants’ consent and then transcribed verbatim. Ethical approval for this study (No: 2018/13) was granted by the Institutional Review Board of Bogazici University.
Inclusion criteria for the POs were broad: Organisations had to be active (must have posted at least one activity online or appeared in the media since 2018), be based in Istanbul, present itself as a PO (rather than a disability or medical speciality organisation) and include patients and their relatives in its administration. Istanbul was selected as the research site because it is Turkey's largest city and the country’ main hub for voluntary organisations. Potential participants were identified using the official publicly available database of registered associations (The Ministry of Interior, 2020). As of January 2020, Istanbul had 73 associations that were classified as patient rights and solidarity associations. After a review of their websites and social media pages, 20 POs that met the inclusion criteria were identified. To cross-check whether any POs had been missing in the official list, an online media search was conducted through the Google news search engine for the period between 2018 and 2019 using the Turkish keywords for ‘patient rights organisation’ and ‘patient rights’. This generated three additional POs. Of those 23, four did not respond to the invitation, leaving 19 POs on the final list.
Most of the POs (n = 15) were founded after the 2003 reform. The majority (n = 17) are disease-specific, while the rest (n = 2) have a broad patient-rights focus. Of the 17 disease-specific POs, 10 were for rare diseases and the remaining ones for common chronic diseases. In the initial correspondence, POs were asked to nominate one respondent from their organisation who they thought was in the best position to communicate the problems their constituencies face in interacting with the health-care system. Fifteen POs nominated one or more of their executive board members (EBMs), three nominated a professional employee, one nominated both an employee and an EBM. A total of 26 individuals were interviewed. Thirteen interviews were conducted with a single respondent, and the remaining six were carried out with more than one representative from the same PO. More than half of the respondents (n = 14) were either patients or relatives of a patient, and the remaining 12 were neither patients nor patient relatives (five were employees).
Interview transcripts were analysed using NVivo 12 Pro. The data were coded by the author following a two-staged, thematic (or semantic) analysis approach, as discussed in Braun and Clarke (2006). A combination of deductive and inductive coding, also known as the blended approach (Graebner et al., 2012), was applied. The strategy employed in thematic analysis involved searching for common patterns across the entire dataset. During the first stage, two deductive codes, both borrowed from UHC indicators, were used as follows: essential service coverage and financial protection. At the second stage, an inductive thematic approach was preferred—as recommended by Patton (2014)—because a detailed coding of PO perspectives on a health-care system requires both a contextually grounded approach and an open-coding strategy to capture the diversity of responses. The use of an inductive approach does not imply that the analysis was not author-driven, however. The author used thematic analysis in a contextual manner (Braun & Clarke, 2006) that interprets and groups the respondents’ statements in the light of the author's background and accumulated expertise in the Turkish health-care system.
All themes developed during the analysis are illustrated by quotations. To ensure confidentiality, illustrative quotes are presented with the informant's identifying number indicating the order of interviews (and with a letter specifying the informant, if more than one informant were present in the same interview), followed by the focus of the informant's PO (e.g. 6B, rare-disease PO, metabolic). To assure analytic rigour, the consolidated criteria for reporting qualitative research (Tong et al., 2007) were consulted, and factual inconsistencies that occasionally arose in the interviews were detected and then resolved by triangulating between respondent accounts and the regulations in force. Finally, the relative prevalence of themes in the dataset is expressed by qualitative descriptors such as the majority, many and a few, as suggested by Braun and Clarke (2006).
The data may suffer from a self-selection bias; the active presence of these POs and the specific diseases that most of them concentrate on may be indicative of an unmet need or a grievance these groups of patients have. Although using this particular angle risks skewing the analysis, it can also be considered a strength inasmuch as it sheds light on the multi-faceted experiences of diverse groups of patients with the health-care system, unlike a generalist health-care system assessment.
FINDINGS
The dataset brings to light valuable knowledge that POs possess with respect to their constituencies’ varied experiences with and expectations from the health-care system. The experiential knowledge of patients emerges from the interactions between self-reported needs and expectations of patients on one hand and the distinct diagnosis, treatment pathways and insurance coverage that the health-care system provides on the other. In addition to their other roles, POs serve as a communal (at times, a virtual) space where patients can gather and share experiential knowledge. Interviewee responses show that POs turn the experiential knowledge of disparate patients into experiential expertise in the health-care system and thus shed light on the often-overlooked service coverage and financial protection gaps. The findings are organised under two broad themes borrowed from the UHC indicators: essential service coverage and financial protection. These themes are substantiated by subthemes that were developed inductively from the dataset.
Essential service coverage
Turkey's UHC service coverage index score for 2017 was almost equal to the average score for upper–middle countries (WB, 2020b). The analysis here identifies gaps in essential service coverage and this which indicates a mismatch between PO perspectives on the Turkish health-care system and the selective essential service coverage indicators upon which the technocratic definition of UHC relies. Comments about the gaps in essential service coverage are grouped under four subthemes: health workforce shortages, the availability of quality care, coverage gaps and limited access to information on diagnosis and treatment.
Health workforce shortages
The number of physicians in Turkey who specialise in endocrinology is not more than 100. It is not enough, and [what is more], there are very few hospitals with endocrinology departments. (6B, rare-disease PO, metabolic)
Physical procedures such as chemotherapy, radiotherapy or surgery are important, but cancer is a social and family issue, so its psychological aspect is important as well. Unfortunately, there are not enough specialists in public hospitals. (17A, chronic-disease PO, cancers)
Indeed, the insufficient number of mental health workers is a problem of the Turkish health-care system as a whole, but the analysis indicates that mental health for cancer patients requires special attention.
Let’s say [there are] about 10 specialists [that we can rely on]. The problem is that all of them work at private hospitals, so access to care [in a public hospital] is a major challenge. (18, rare-disease PO, gastroenterological)
The combination of too few doctors in some specialisations and the uneven distribution of specialists across sectors thus limits access to care for some patient groups and erodes effective coverage for these groups.
The availability of quality care
Let’s say a patient needs physiotherapy. [S/he] is randomly referred to a therapist for an hour of therapy. But for this particular disease, the therapist must have the necessary training [specific to patients with this disease]. The breathing exercises are vital, but when the therapist doesn’t perform them . . . What I want to emphasise is that it is not a luxury in the case of this disease. (1, rare-disease PO, muscular)
Since [rare diseases in children] are not well known, parents normally consult either general practitioners or paediatricians . . . The family notices there’s a problem, but because they are not guided properly, and when there’s no suspicion of a rare disease, they have to visit several physicians, several hospitals over and over. This situation prolongs the diagnosis process. (12B, rare-disease PO, metabolic)
This quote illustrates the key importance of availability of specialist knowledge of rare diseases as a prerequisite for timely quality care. PO perspectives on the quality of care, however, are varied and do not suggest an overall deficiency. For example, a few chronic disease POs (3, 14) reported progress in the dissemination of knowledge among practising surgeons about an infectious disease that facilitated their patient constituency's access to quality surgical services.
Coverage gaps
Most POs mentioned a wide range of problems related to restrictions in coverage. Some mentioned partial or full restriction in coverage with reference to one or more of the following: diagnostic tests (11, 7A), preventive medications (3B), treatment medications (16), treatment services (17A), medical devices (9) and assistive technologies (2). Assessing the clinical effectiveness of requested prevention and treatment options is beyond the scope of this article, but respondent perceptions still warrant attention, as they may indicate significant gaps in coverage and patient citizenship claims. Given that clinical effectiveness is not always the sole determining factor for reimbursement decisions, PO perspectives may also be interpreted as political demands that challenge the fiscal priorities, which restrict coverage. There was one exception where one respondent (PO 10) noted that their patients enjoy full coverage, including treatment and medications, and that they focus on prevention.
Type 1 patients have access to medications, but medications for Type 2 and Type 3 patients are excluded [from reimbursement]. (13, rare-disease PO, neurological)
This quote illustrates the extent to which essential service coverage can vary among patients with different types of the same disease. In response to the differential treatment by the health-care system, this PO deploys a discourse of patient citizenship to advocate for the inclusion of medications for all types of this disease into the reimbursement list.
The state doesn’t consider communication as vital. How can it be that communication isn’t vital? . . . They should distribute these [communication] devices to patients who are able to use them. With a tablet and a specific tool, patients can talk to you using their eyes; they can connect to the world via that tablet. They can also use them as a remote control so that they can watch TV and movies, and check their e-mails . . . And you, as the state, don’t provide that to patients. (2, rare-disease PO, neurological)
Power wheelchairs, for example, are included in SSI (Social Security Institution) reimbursement only when a child turns 17, but some of our children have already lost the use of their arms by the time they are 17. If they can sit up and use their arms at 8–9 years old, we can let them go out with their wheelchairs, but the SSI doesn’t reimburse the cost of wheelchairs in this case. It is a grim reality. (9, rare-disease PO, muscular)
The quotes show, from the perspective of POs, the contested nature of determining what essential services and devices are and when they are needed. They also demonstrate that POs make patient citizenship claims in the form of specifying essentials for the health and wellbeing of their disease constituencies. The role that POs play in turning patients’ experiential knowledge into the organisations’ experiential expertise and patient citizenship claims can also be observed in respondents’ mention of unfair fiscal priorities when they explain coverage gaps for certain services and devices that they consider essential.
A 3-point increase in physiotherapy assessments is required in order for a patient to continue the medication. But we say, ‘this is a progressive disease; you may demand an increase from 20 to 23, but if the patient doesn’t take these medications, it will drop from 20 to 15. It’s a gain even if it stays at 20, which would mean the disease has stopped progressing’. (13, rare-disease PO, neurological disease)
This quote shows that the policymakers in charge of regulating coverage and POs can differ in their expectations from a particular treatment, so they arrive at different conclusions about reimbursement. The expectation of an absolute gain in the coverage regulations may justify denying a treatment, while a PO’s expectations for relative gain may lead them to perceive the exclusion as unjustified.
Limited access to information on diagnosis and treatment
Most patient complaints we receive are about informed consent. Patients generally state also that they are not given enough information about medical procedures. (15, PO with a broad focus)
What are you going to encounter? What is going to happen? You can’t get this information on the Internet, but physicians in Turkey don’t have time to give you the information you need. (11, rare-disease PO, pulmonary)
The state prescribes something [a treatment] but the patient doesn’t know what is prescribed or what is going to be done. The oncologists don’t have time to explain. I mean, many patients are waiting in line, so I can’t blame them [oncologists]. But patients who are fighting for their lives want to know what will be done to them and what the process will be like. (19, chronic-disease PO, cancers)
The easing of access to health-care services in Turkey that was reflected in the upsurge in utilisation that accompanied the reform was at the expense of a reduced amount of time allocated for each patient. However, the analysis shows that respondents consider the adequate amount of time allocated per patient is key to physicians’ being able to communicate information to their patients about their treatment. It corroborates with the findings of Irving et al., (2017) indicating that consultation length in Turkey is one of the shortest among 67 countries. The analysis also underlines that standardising the time allocated for each outpatient visit might hinder the necessary communication between physicians and patients who have complex health problems, given their often lengthy and complicated treatment pathways.
Financial protection
The incidence of catastrophic health-care expenditures (at 10 per cent threshold) in the Turkish population (3.2 per cent) places the country at the lower end of the spectrum in international comparisons, based on the latest data from 2016 (WHO & WB, 2019). The analysis here indicates the inability of the technocratic definition of UHC to capture gaps in financial protection such as those reported by POs. Respondents reported varied and recurrent problems in the Turkish SHI’s ability to ensure financial protection for their patient constituencies. These problems are grouped under three subthemes: underinsurance, lack of insurance and co-insurance and overcharging by private providers.
Underinsurance
You know, patients have to make a 10% co-payment [for medications, based on the price agreed between the company and the SSI], and [medications] are so expensive. Let’s say, for instance, a medication costs 6,000TL, so a 10% co-payment would be 600TL. People aren’t able to pay that. (5, rare-disease PO, neurological)
The amount of co-payment mentioned as an example in this interview was about a quarter of the monthly minimum wage in 2020, which would put significant pressure on low- and middle-income patients. In this context, the population-level measures of financial protection may be well-suited for expenditures by patients with common chronic illnesses, as they constitute a larger group, but these indicators risk obscuring the gap in financial protection for patients with rare diseases, given their relatively low proportion of the general population. There was no mention of co-payments for medications among common chronic-disease POs, which can be explained in reference to co-payment exemptions granted for patients with some prevalent chronic diseases such as cancers.
Lack of insurance
Most of them [medications] are reimbursed. . . . However, there is a problem in access to social security. If the state were to say – I think it’s like this in Italy – ‘I am providing all care and treatments for patients with this disease without any charge’, the problem would cease to exist. (11, rare-disease PO, pulmonary)
Some people own a house, but they don’t have any money. I mean, they don’t work, so they aren’t able to pay 84TL [the standard premium rate per month]; they can’t even pay their electricity and water bills. There are people like that. In response, we [as the PO] say, this chronic disease requires regular use of medications. So we pressure the SSI to classify this medication differently [and to provide it regardless of the social insurance status of the patient]. (14, chronic-disease PO, infectious)
Two respondents reported that some members of their patient groups were excluded from SHI, for which reason some patients quit treatment. As in the case of co-payments, the Turkish SHI, with the reform, made exceptions for specific services (e.g. ER and chemotherapy) by lifting the requirement for SHI active membership for access. However, as the quotes above demonstrate, exceptions were granted unevenly across patients with specific diseases. To compensate for the financial protection gap that affects their patient constituencies, the POs quoted above called for their treatments to be included in this special category. The POs’ assertion of particularistic demands, rather than a request for a fundamental change in health-care financing, reveals both the opportunities and the limits of the politics of patient citizenship.
Co-insurance and overcharging by private providers
In the context of an internal market for provision, the analysis suggests that the ability of patients to choose their service provider is context-specific and out of reach for some. Factors that limit patient choice include uneven distribution of specialists across sectors and limited service capacity in the case of public providers, as discussed in the previous section. In such cases, using a private service and paying a co-insurance become de facto requirements for access to a specific service—a requirement that deviates from the ethos of UHC. This phenomenon was mentioned in several interviews. One respondent from a cancer PO (4A) mentioned, ‘People started having to pay vast amounts of money [in the form of co-insurance] to private hospitals’.
Some [private] hospitals are illegally charging patients for chemotherapy or radiotherapy, even though it is fully covered by the SSI. Patients are also obliged to pay for surgery [in private hospitals], and surgery costs the most. (19, chronic-disease PO, cancers)
Cancer treatment, on paper, is free of charge. Just go into a private hospital and say ‘I have lung cancer and I can’t find available space in a public hospital to get treatment’ and see whether they charge you or not. On paper, it is supposed to be free of charge. But if there is no available space in public hospitals or if you can only get an appointment months later, you find yourself in a state of learned helplessness and, out of desperation, you are obligated to pay [to private hospitals]. (8, PO with a broad focus)
The analysis demonstrates that POs highlight financial protection gaps, discrepancies between regulations and practice and a nuanced understanding of patient behaviour under such circumstances that might otherwise escape attention.
DISCUSSION
The technocratic definition of UHC is inadequate for a nuanced examination of the UHC progress at the country level for two reasons. First, it fails to identify elusive gaps in essential service coverage and financial protection. Second, it disregards alternative definitions of essential services that POs make in the form of patient citizenship claims. The static and limited nature of the technocratic definition causes a disconnect between the problems identified by POs and this global benchmark. This disconnect implies a missed opportunity for empowering patient groups to pursue broader definitions of essential services and financial protection and to articulating their patient citizenship claims with the UHC framework. In contrast, the aspirational definition of UHC provides a flexible framework through which POs can name and shame gaps in service coverage and financial protection.
A contextual and qualitative analysis of PO perspectives in an upper–middle-income country that was considered to have technically achieved UHC substantiates this conclusion. Using Turkey as a case in point, this analysis demonstrates that PO perspectives can be used as an entry point into a nuanced and bottom-up assessment of health-care system and paint a picture of how the state of essential service coverage and financial protection differs from what appears in international comparisons. For the case of Turkey, it finds that health workforce shortages, availability of quality care, coverage gaps and limited access to adequate information are the major deficiencies in essential service coverage. It also identifies three major problems with respect to the financial protection component of the Turkish health-care system: underinsurance, lack of insurance, and co-insurance and overcharging by private providers.
One key point of divergence between the respondents’ assessment of UHC and the indicators used for evaluating a given country's progress is that their vantage points are different. While PO perspectives reflect the viewpoint of their respective patient groups, the UHC indicators rely on population-level data. From the perspective of POs, service coverage and financial protection for their patient groups are either actualised or not actualised. The UHC indicators, on the other hand, rely on overall scores that are placed on a numerical continuum. Resolving this discrepancy between two viewpoints of assessing a health-care system may not be viable through a revised single global benchmark, given countries’ differences in resources and capacities. It may nevertheless be possible with the development of an aspirational understanding of UHC that is context-sensitive, flexible and dynamic.
Focusing on PO perspectives to explore the multi-faceted and complex functioning of health-care systems is a viable research strategy. This strategy is based on the assumption that the strategic position of POs enables them to collect experiential knowledge that patients gain from their interactions with payers and providers, and to turn that knowledge into experiential expertise on health-care systems. While it would be naïve to treat the epistemological expertise of PO as mere reflections of their patient group experiences, they can still be used as imperfect approximations of those experiences, especially in the absence of detailed quantitative data on essential service coverage and financial protection for disease constituencies.
Examining PO perspectives to service coverage and financial protection in health-care systems also enables researchers to determine how and to what extent a particular health-care system caters to different patient groups and the diversity of their experiences with the health-care system. On the one hand, the diversity of health-care experiences across varied patient constituencies captured in this study is limited by a self-selection bias by researching POs—the presence of which can imply an unmet need or a grievance of their patient groups. On the other hand, this research strategy can also be considered suitable for revealing gaps in essential service coverage and financial protection in the eyes of various patient groups that suffer the most. Comparative or case studies on the experiences of particular patient constituencies, however, will produce more robust findings.
Finally, POs are platforms for emerging forms of patient citizenship. Their exclusion from policymaking limits possibilities of improving the health-care system. In the Turkish case, the widely used individual complaint mechanisms can help resolve issues that do not require regulatory, budgetary or organisational changes in the health-care system, but they cannot compensate for the knowledge that POs can put forward, as POs express a critique and make claims that often necessitate such changes. Keeping intact the aspirational element of UHC will, therefore, empower POs at the country level to participate in the politics of priority setting in health care.
CONCLUSION
This article reveals the discrepancy between the aspirational and technocratic definitions of UHC through a contextual qualitative analysis of PO perspectives on a health-care system that is deemed to have achieved UHC. Investigating PO perspectives has the potential to reveal varied but recurrent gaps in essential service coverage and financial protection that would otherwise be missed in generalist assessments. It also has the ability to show the contested nature and insufficiency of selective and population-level indicators used for evaluating capacity for service provision and financial protection. Paying closer attention to valuable experiential expertise that POs have in the functioning of health-care systems thus offers researchers the opportunity to develop a nuanced and bottom-up understanding of these systems.
ACKNOWLEDGEMENT
I am grateful to my research assistant Puren Aktas for her help.
AUTHOR CONTRIBUTION
Volkan Yilmaz: Conceptualization (lead); Data curation (lead); Formal analysis (lead); Funding acquisition (lead); Investigation (lead); Methodology (lead); Project administration (lead); Writing-original draft (lead); Writing-review & editing (lead).
