ENGAGING WITH THE BENEFICIARIES IN REFORMING HEALTH CARE. A CASE STUDY OF PATIENT INVOLVEMENT IN THE REFORM OF PSYCHIATRIC CARE IN THE CZECH REPUBLIC.

• Author: Dobiasova, Karolina

1. Introduction

   Mental disorders have been major causes of sickness and disability all over the world. One in four people worldwide experience mental or neurological disorder at some point in their life; in the European region, mental disorders are responsible for 30-40% of chronic sick leave, costing some 4% of GDP (OECD, 2018). In addition, the unpredictable developments associated with the COVID-19 pandemic, the subsequent lockdown and the economic impact increase the risk of mental health issues (Moreno et al., 2020). In the context of mental health policies, the World Health Organisation (WHO) stresses the role of patient empowerment, consisting in the strengthening of their rights, encouraging their autonomy, finding opportunities for their participation in decision-making processes and sharing responsibility for their own mental health (WHO, 2015).

   Since the 1990s, new tendencies have gained ground in psychiatric care to replace institutional care with community care (Muijen and McCulloch, 2019; Semrau et al., 2011). In many EU countries, a certain part of psychiatric care has been moved from inpatient facilities to community-based mental health services, which offer people with mental disorders professional assistance in their natural social environment, relying on their functional networks (Keet et al., 2019). The speed and extent of such changes varies considerably across the EU (Knapp et al., 2007). In most countries institutional care still prevails over community care (Semrau et al., 2011; Dlouhy, 2014; Krupchanka and Winkler, 2016), most conspicuously in the Central and Eastern European (CEE) region (Pec, 2019; Hudson and Dragomirecka, 2019; Scheffler, Shumway and Chereches, 2020). Reforms of psychiatric care in CEE countries are hindered by several major constraints, including the persistent stigmatization and discrimination of people with mental disorders; relatively high cost of community care in countries with limited healthcare resources; and the lack of experts at all levels, from psychiatrists to social workers (Skuse, 2018). The EU has allocated financial resources within its structural funds for its member and candidate states to carry out reforms of mental health care. These resources are currently used, e.g., in the Czech Republic (CR), Poland and Turkey (Muijen and McCulloch, 2019).

   In the EU, there is a strong policy commitment that patients and their families should partake in the mental healthcare policy. It is argued that patient involvement also improves the quality of care and leads to effectiveness of services (Colombo et al., 2012; J0rgensen and Rendtorff, 2018). Within the decision-making processes in psychiatric care, the accent has gradually shifted from the providers to the recipients, with patient involvement taking various forms at various levels (Hickey and Kipping, 1998; Tait and Lester, 2005; Tambuyzer, Pieters and Van Audenhove, 2014). While western EU countries show high levels of patient involvement in psychiatric care, CEE countries, lacking a tradition in this process, have only just started to allow patients some level of power (WHO, 2008; Krupchanka and Winkler, 2016).

   The aim of the present article is to review the progress of the mental health reform in the Czech Republic in terms of patient involvement as well as identify the greatest barriers of patient involvement in the reform. First, we briefly describe the Czech mental health care system and its reform. After outlining the theoretical and methodological approach used in our study, the research results on patient involvement in the mental health care reform in the Czech Republic are presented and discussed.

2. Overview of mental health care system in the Czech Republic

   Mental health care in the Czech Republic (CR from here on) is financed via the health insurance system, taxes, and regional budgets (Dlouhy, 2014). Like in other CEE countries, national expenses on mental healthcare are below EU-15 average (Krupchanka and Winkler, 2016), while more than half of public mental health expenditures are allocated to inpatient care (Broulikova, Dlouhy and Winkler, 2020).

   The CR has a long tradition of large psychiatric hospitals; the average number of beds in one psychiatric hospital was 492 in 2014, which is way above the EU-15 average of 185 beds per facility (Hoschl, Winkler and Pec, 2012). In addition, Czech psychiatric hospitals have been criticised for their substandard conditions and low quality of care for long-term patients (Kalisova et al., 2018). Community services focusing on mental health are not fully developed (Tuskova, Dobiasova and Duskov, 2020).

   The process of patient involvement has gained strength in the CR in recent years, not only in mental health care, but also across the whole Czech healthcare system. Self-help groups for patients and their families, as well as patient advocacy groups have gained increasing influence in the process of mental health policymaking (Honova, Numerato and Kondratova, 2019).

   2.1. Reform of psychiatric care in the Czech Republic

   A new chapter of mental health care development in the CR opened in 2013 with the announcement of the Strategy for the Reform of Psychiatric Care (SRPC), designed to fulfil the commitments ensuing from international strategic and human-rights documents (Ministry of Health, 2013). In accordance with the WHO recommendations, the Strategy proposes a new structure of the mental healthcare system with an emphasis on community care and the involvement of communities, families and recipients of the care in the planning and development of mental health policies (WHO, 2011); the costs of the reform are largely covered from EU Structural and Investment Funds (ESIF) (Duskov, 2019).

   The basic aim of the reform is to improve the quality of life of people with mental disorders (Ministry of Health, 2013). The psychiatric reform expects the new system of mental health care to stand on four pillars (see Figure 1). The principal systemic change consists in a new element which is to be incorporated in the current system --the Centres for Mental Health (CMH). CMHs are expected to provide community care by multi-disciplinary teams and coordinate the provided care with other healthcare facilities and social services in the region (Ministry of Health, 2013; Dobiasova et al., 2016). The core of the reform focuses on creating a network of CMHs and lowering the number of beds in large mental hospitals (Prototopova, 2018).

3. Theoretical perspective: patient involvement in the health care and its constraints

   Higher patient involvement in healthcare is one of key trends in the reforms of healthcare systems in western economies (Church, Saunders and Wanke, 2002; Wait and Nolte, 2006; Tritter, 2009; Mockford et al., 2012; Carman et al., 2013). When referring to the focus on the role of patients in healthcare, the authors use various terms interchangeably, such as patient empowerment, patient involvement, public and patient involvement, patient activation, patient engagement, patient enablement, patient participation (Boudioni, McLaren and Lister, 2017; Castro et al., 2016, McAllister, 2015; Carman et. al., 2013; Triterr, 2009). The present article uses the term 'patient involvement' although the authors are fully aware that it should also include the involvement of the patient's caregivers and on the general level also the public (Dent and Pahor, 2015). Our article shall adopt the definition of patient involvement coined by Robinson et al. (2008) 'as the deliberate activation of patients in their own care or the development of health care'.

   Patient involvement is driven by clear evidence that patients and citizens can considerably influence healthcare policies at all stages, from the design to the provision of the care (Ocloo and Matthews, 2016). The pressure to allow patients a stronger say is often associated with the neoliberal attitudes towards public administration, emphasizing the focus of public services on the client-citizen's satisfaction. At the same time, it was presumed that a higher level of patients' autonomy and involvement could encourage competition and efficiency, eventually lowering healthcare expenses (Dent and Pahor, 2015). The efforts to increase the involvement of patients were also driven by dissatisfaction with the paternalistic approach in healthcare which reduced patients to passive recipients of care, incapable of any autonomous control (Clark, Glasby and Lester, 2003; Dent and Pahor, 2015).

   Dent and Pahor (2015) proposed a comparative patient involvement framework, describing three ideal types of patient involvement: choice, voice and co-production. The choice type understands patients as consumers; the voice stresses their active participation in decision-making processes; and co-production concentrates on individual or collective engagement of patients (and caregivers) in the delivery of healthcare services in collaboration with health professionals. Carman et al. (2013) devised a multidimensional framework for the continuum of patient involvement in healthcare, combining three levels of healthcare organization and three levels of patient involvement. Carman et al. (2013) see a causal relationship between the level of involvement and the information flow between patients and care providers, the patients' opportunity to influence the provided care, and the way patients or patient organizations participate in decision-making processes. Similarly, Tambuyzer, Pieters and Van Audenhove (2014) relate patient involvement to their power, defined by the extent and quality of their access to information. The lower degree of Carman's continuum, so-called 'consultation', means that patients are involved, but with limited power and/or authority in the process. At the higher degree of the continuum, the 'involvement', patients share authority and responsibility with health professionals and act as partners in defining and designing the...