3.1.1 Concept

Greer et al. (Reference Greer, Wismar and Figueras2016) argue that if the governance problem is, among other things, about opacity, poor communication or distrust in decision-makers, then it is an issue of transparency. Transparency is achieved when the public is informed about policy decisions as well as the processes by which the decisions were made. Data and policy decisions should be available to the experts who can challenge the decision-making processes, their outcomes and grounds for the public. When devolving functions to local governments or delegating power to external organisations, transparency can suffer. In that case, it is up to the government to take measures to ensure transparency in vulnerable areas.

3.1.2 Context

Based on a federal government with decentralisation to 16 federal states (Länder), the German health system reflects the fragmented and, in some respects, complex governance structure of the country. Whilst the Länder are mainly responsible for hospital planning and the supervision of public health authorities in districts, at the federal level, decisions on health service provision are taken by the self-governing bodies of the Federal Joint Committee (FJC). The role of the Federal Ministry of Health in this structure is only supervisory; it is not directly involved in the decisions of self-governance (Busse et al., Reference Busse, Blümel, Knieps and Bärnighausen2017). It has the right, however, to object to the decisions of the FJC within two months of their submission to the FJC. Moreover, the government shapes the framework conditions of the functioning of self-governing bodies and can thereby set rules for better transparency. The reliance on self-governance is continuously at the centre of political discussion, and the government has started to assume a more direct regulative role in health policies (Blümel et al., Reference Blümel, Spranger, Achstetter, Maresso and Busse2020).

When talking about transparency, decisions taken by the self-governing bodies gain much attention. Discussions about the structural deficits and the legitimacy of self-governance are far from new and have been addressed for almost 50 years (Muhr, Reference Muhr1974; Bogs, Reference Bogs1977; von Ferber, 1977; Nowak and Schaper, Reference Nowak and Schaper1981; Grosshaus and Herber, Reference Grosshaus and Herber1985; Braun and Klenk, Reference Braun and Klenk2006; Braun et al., Reference Braun, Klenk, Kluth, Nullmeier and Welti2008). When looking at some other European countries, such as Belgium or France, increasing centralisation of power and state influence on self-governance can be seen as a way to tackle the transparency issue. While an assessment of the implications of such power concentration at a higher level depends on individual framework agreements and specific goals to be achieved in the system, more state influence is usually associated with less competency of self-governing actors (Matthes, Reference Matthes, Klenk, Weyrauch, Haarmann and Nullmeier2012; Weyrauch, Reference Weyrauch, Klenk, Weyrauch, Haarmann and Nullmeier2012a, Reference Weyrauch, Klenk, Weyrauch, Haarmann and Nullmeier2012b). Austria and the Netherlands, both coming historically closest to the traditional German self-governance structure, applied different approaches to exercise state authority. While the first one has centralised, merged and professionalised the various branches of social insurance at the federal level (Haarmann, Reference Haarmann, Klenk, Weyrauch, Haarmann and Nullmeier2012a; Bachner et al., Reference Bachner, Bobek, Habimana, Ladurner, Lepuschütz, Ostermann, Rainer, Schmidt, Zuba, Quentin and Winkelmann2018; Österreichische Sozialversicherung, 2018), the latter diminished the role of corporatism in social insurance and relied primarily on managed competition (Haarmann, Reference Haarmann, Klenk, Weyrauch, Haarmann and Nullmeier2012b; Kroneman et al., Reference Kroneman, Boerma, van den Berg, Groenewegen, de Jong and van Ginneken2016).

At the FJC, the self-governing bodies of payers and providers make decisions about healthcare provision in Germany. Registered patient organisation groups are allowed to participate in the decision-making process, albeit without voting rights. While the plenary sessions of the FJC can be followed via live-stream on the FJC website, documents of the preparatory work done in the working groups and sub-committees are not open to the public (G-BA, 2021a, 2021b, 2021c). Despite the past endeavours to improve the transparency of policy decisions of the FJC, current debates indicate a lack thereof (RBF, 2021). Neither citizens nor external professional bodies can receive detailed information on the policy discourse and agenda-setting processes at the FJC.

Another deficiency from the citizens' perspective in this context might be the technical jargon to communicate the FJC decisions. Clear and useful public information is, however, one of the common transparency mechanisms (Greer et al., Reference Greer, Wismar and Figueras2016). Besides higher health literacy levels of the population, a simplified language of policy documents would help the public and media to comprehend the policy content and challenge them where necessary, contributing to greater transparency in the health system. This point is also in line with the demands of the citizens involved in the latest citizen dialogue of the Neustart project (RBF and IKU 2021).

3.1.3 Expert discussion outcomes

The experts discussed both the advantages and disadvantages of having self-governance in Germany, which can be summarised as follows: self-governance means autonomy of certain professional groups and, as such, finding compromises and balancing conflicting interests between those groups. This bottom-up approach provides a constructive basis for effective negotiations between Statutory Health Insurances (SHIs) and healthcare provider organisations, creating a favourable ground for the acceptance of adopted measures among frontline healthcare workers. Despite their principally clashing interests in terms of budget allocation, the representative organisations of payers and providers of the FJC often act in harmony and enjoy a high level of autonomy from the state. In turn, this resilient system of self-governance offers technical expertise in policymaking, detached from party politics and political interference.

Despite these advantages, the pitfalls of relying on a decision-making system that is mostly steered by self-governance cannot be overlooked. As per law, self-governing bodies should be oriented towards the common good. However, they tend to advocate for their own interests in a silo mentality, creating a robust defence mechanism to preserve the status quo at all costs, although the status quo is unsustainable. Their change-resistant and self-centred modus operandi create a vicious cycle in the fragmentation issue of the health system, as they focus on the distinction of their tasks and responsibilities instead of the overall coordination of health services. However, to overcome the future challenges in financing and modernising healthcare, an inter-connected, patient-oriented and agile self-governance is more than needed. To date, major reforms resulting in substantial changes in the SHI system have mainly been initiated from outside, namely by the federal government. For this reason, the experts argued that it would take massive political pressure to bring more transparency to self-governance and their decisions.

Nonetheless, the experts agreed that the self-governance structure does not need to be abolished to achieve transparency. From the government's perspective, specific technical qualifications of the self-governing bodies would be difficult and costly to gain from outside of this framework when making policies. Moreover, by delegating responsibility to self-governance, the government prevents possible conflicts between the payer and provider organisations, securing the continuity of one of the most important public services: the provision of healthcare. Hence, despite the aforementioned weaknesses, it would be neither desirable nor feasible to establish a functional equivalent to the FJC from scratch.

For these reasons, the experts suggested that the strategies for more transparency could be developed in two ways. At the local level, it is worth considering increasing the proximity of decision-making processes of self-governance to citizens and ensuring closer cooperation between public health authorities and healthcare providers. At the federal level, transparency can be achieved through regular, comprehensive, timely and user-friendly information from the FJC to the citizens. Such communication can be published, for instance, in an online platform where bilateral information exchange between citizens and the FJC is ensured. Self-governing bodies of the FJC should be more inclusive, taking the patients' and citizens' opinions into account when making policies. In this context, strengthening the health literacy of citizens can support better-informed perspectives in decision-making processes. Thus, transparency can be increased through a timely disclosure of policy discussions in the FJC in simple language on the one hand and a higher health literacy level of the population on the other (see also Section 3.3. below).

3.2.1 Concept

Accountability is a relationship between an actor and a forum (such as an agency and a legislature) in which the actor must inform their decisions, explain them and thus can be mandated and sanctioned. Hence, accountability is concerned with explaining actions as well as the answerability and responsibility of those actions and the underlying decisions: its main goal can be, among others, to ensure patient safety (Greer et al., Reference Greer, Wismar and Figueras2016). This particular aspect of accountability has garnered much attention in Germany for the last two decades. In response to growing dissatisfaction among providers with cost-containment measures and recognition of quality problems in health services, efficiency and quality of services have become the core values from 2000 onwards (Busse et al., Reference Busse, Blümel, Knieps and Bärnighausen2017).

Accountability can be improved through different policy instruments, depending on the stakeholders in focus; the most crucial point in this context is to define ‘accountability to whom?’ (Greer et al., Reference Greer, Wismar and Figueras2016). Considering the course of the major health policy discussions in Germany, the answer to this question can be given as ‘to patients’, essentially because they are the ones who fund the SHI system. With this in mind, the following paragraphs elaborate on the quality standards of health services, the policy instruments for assuring quality and the implementation of appropriate measures in the German health system.

3.2.2 Context

The literature suggests that a number of policy instruments can be considered for quality improvement efforts; managed competition, bundled payments and disease management programmes (DMPs) to name a few (Eurohealth, 2013). With regards to managed competition, van Ginneken et al. (Reference van Ginneken, Schäfer and Kroneman2011) and Siciliani et al. (Reference Siciliani, Chalkley and Gravelle2017) report the potential for quality improvement, stating, however, that this might affect the relationship between healthcare providers, patients and health insurers. They highlight that the balance from established governance structures is usually so delicate that any change in this equilibrium should be managed in a well-regulated framework. According to van Ineveld et al. (Reference van Ineveld, van Wijngaarden and Scholten2018), the specialisation, cooperation and networking of service providers can complement managed competition arrangements to ease such transformation. Bundled payments, as one of the most discussed forms of quality-based remuneration, can also be a promising approach for cost containment, cooperation and integration of health services (Struijs and Baan, Reference Struijs and Baan2011; Llano, Reference Llano, Merkur, Maresso and McDaid2013). Moreover, Schneider et al. (Reference Schneider, Donnachie, Tauscher, Gerlach, Maier, Mielck, Linde and Mehring2016) show that integrated care, even in its imperfect form of DMPs, results in overall better health outcomes by enhancing the quality of healthcare provision. Although selective contracting of health services for integrated care through DMPs requires some financial resources at the beginning, the burden can be compensated by higher quality services in the long run (Kifmann, Reference Kifmann2017). Even though studies demonstrate the potential of integrated care in terms of quality of care, improved health outcomes and higher patient satisfaction, evidence on the economic impacts of integrated care approaches remains thin (Müller et al., Reference Müller, Rothgang and Glaeske2015). In the evaluation of complex care programmes with high contextual influence, there is a need for better knowledge about what works for whom, under which circumstances and with what forms of collaboration. To reach this goal, it is advisable to use pluralistic quasi-experimental methods in evaluation studies with the right set of indicators (Nolte and Pitchforth, Reference Nolte and Pitchforth2014).

Accountability vis-à-vis patients (thus, indirectly, payers) can be increased through a more patient-oriented health system. In this context, Traxler (Reference Traxler, Hurrelmann, Shaikh and Wendt2019) reports positive effects on patients' quality of life when their preferences and lifestyles are taken into account during their treatments. Even small changes in their medical care and organisational adjustments in the doctor's office to better suit patients' daily routines can make a difference in health outcomes. As for the individual forms of participation at the clinical level, there is a growing understanding of the importance of well-implemented shared decision-making arrangements, especially when cooperating with general practitioners (Joosten et al., Reference Joosten, DeFuentes-Merillas, de Weert, Sensky, van der Staak and de Jong2008). While Patient-Reported Experiences (PREs) and Patient-Reported Outcomes (PROs) have mainly been used in the context of managing specific diseases thus far, their integration into standard care can contribute to improving the quality of services in general practice (Eichhorn et al., Reference Eichhorn, Murday, Kohnen, Guttenthaler, Türler, Baumgarten and Wittmann2015). Extending the application of PREs/PROs, mostly collected through questionnaires, can be a good starting point for a better patient-centredness and higher accountability vis-à-vis patients (Desomer et al., Reference Desomer, van den Heede, Triemstra, Paget, de Boer, Kohn and Cleemput2018).

3.2.3 Expert discussion outcomes

The experts stated that important stakeholders for healthcare provision, among others self-governing bodies, must be involved in policy discussions on quality assurance and quality standards. This is seen to be the only way to ensure that the quality assessments based on quality indicators are accepted, adopted and applied by frontline healthcare workers. Although the self-governing bodies of the FJC have developed a number of quality indicators, the accountability aspect in quality assessments is still missing, and subpar healthcare provisions may remain unrecognised. Ideally, a quality assurance mechanism should be in place to detect when provided services do not meet quality criteria in a systematic way over a considerable period of time.

Moreover, the experts mentioned that the existing quality indicators are mainly based on the interests of individual stakeholders that predominantly have a cost-benefit analysis in mind. Policy discussions on health in Germany are very much medicalised and lack crucial elements that can foster evidence-informed decision-making for preventing ill health. Thus, the political agenda has a bias towards curing diseases rather than keeping citizens healthy. Even the indicators on healthcare services fail to reflect the reality of care pathways that patients experience throughout their life. Although the directives of the FJC on quality management and quality assurance include relevant clauses for patient safety, they are formulated in vague terms, hampering the traceability of quality problems in the chain of health services provided by different healthcare organisations.

When discussing quality, the experts also highlighted that the inner motivation of frontline healthcare workers should be of utmost importance. Quality assurance instruments should be put in place to support a development process in healthcare organisations and create a learning environment, meaning, any victim-blaming and scapegoating should be avoided. This is especially important when the health services result in low-quality outcomes mainly due to structural weaknesses of the system or in healthcare settings on which the providers have little influence. Indeed, one of the greatest challenges when defining policy instruments and technical components of a quality assurance system is to find the right balance between sustaining the inner motivation of frontline workers and detecting at the same time opportunistic behaviours that lead to subpar clinical outcomes.

For this reason, the experts advised using aggregated data on health outcomes at a higher level than in clinical settings and warned against singling out healthcare providers individually. At the local level, they recommended collecting and sharing information about good practices and quality improvement measures, such as quality circles among health care providers. Making good practices publicly available can contribute to reflecting on some structural or process-related weaknesses and bring promising insights for the development of quality indicators. Moreover, they suggested that quality assessment and governance models should go beyond the existing silos and examine the entire treatment chains, foregrounding the importance of integrated care and data sharing between sectors (see also Section 3.5. below). In this context, the experts envisaged integrated care as the new standard of regular care, which should go well beyond DMPs by achieving the coordination of all health services across several sectors (see also RBF, 2021b).

In the context of integrated care, it was also stated that sickness funds, as advocates of patients, should be given more leeway in their contractual arrangements with individual providers, which in turn could improve their accountability to patients. Bundled payments and selective contracting, alongside sharing and using data across sectors, can be suggested as ways to improve the existing system that is primarily based on collective contracts. Based on a joint agreement between the payers and providers on what health outcomes could be feasible to achieve, incentives should be offered for meeting or excelling the quality targets (pay-for-performance). Similarly, sanctions should be put in place if healthcare organisations fail to achieve the targets repeatedly over a certain time period (non-pay-for-non-performance).

3.3.1 Concept

According to Greer et al. (Reference Greer, Wismar and Figueras2016), participation becomes an issue when there is a lack of legitimacy in the decisions taken on the populations affected by them. Participation enables those affected by policies to gain insights into the decision-making process and empowers them to make their voice heard. At the minimum, it should be ensured by law that the people who are affected by the decisions taken for them can express their views on those very decisions.

3.3.2 Context

To draw lessons on the participation domain of the TAPIC framework, some examples of collective citizen and patient participation initiatives from other European countries can be provided. For instance, in the Netherlands, the participation of insured people is enabled through patient representation in health insurance funds as well as institutionalised patient councils in hospitals and care homes (van de Bovenkamp et al., Reference van de Bovenkamp, Grit and Bal2008). Dutch patient umbrella organisations, such as the Patiëntenfederatie Nederland and Landelijk steunpunt (mede)zeggenschap, serve as advocates of patients. In that function, they are regularly involved in legislative processes and major organisational changes, supporting their members through training, concepts and information (van de Bovenkamp et al., Reference van de Bovenkamp, Grit and Bal2008). Furthermore, in Italy the grassroots movement Cittadinanzattiv has been a successful collaboration of numerous civic and patient organisations. Today, about 500 local centres across the country help to resolve patients' complaints about their treatment experience in hospitals and other healthcare settings, engaging in dialogues with healthcare providers to suggest improvements at the local level (Markenstein, Reference Markenstein, Ettischer and Salice-Stephan2000; Ferré et al., Reference Ferré, de Belvis, Valerio, Longhi, Lazzari, Fattore, Ricciardi and Maresso2014). Lastly, Portugal involves a wide range of stakeholders in its national health council, including patient representatives, similar to the FJC in Germany. Stakeholders serve as advisory bodies, discuss emerging issues with each other and take joint decisions whenever possible (Dalton et al., Reference Dalton, Chambers, Harden, Street, Partker and Eastwood2016; de Almeida Simões et al., Reference de Almeida Simões, Figueiredo Augusto, Fronteira and Hernández-Quevedo2017).

In Germany, organisations that represent the interests of patients and self-help groups of chronically ill and disabled people have the right to participate in policy discussions and submit proposals at the FJC. Currently, four patient and self-help organisations are entitled to nominate patient representatives for participation in the FJC discussions, however, without voting rights. This raises the question of whether patients, or in general terms insured people as beneficiaries of SHI services, are accurately represented in health policymaking. On the one hand, it should be acknowledged that insured people (and employers) are represented via trade unions and employer associations, among others, in the governing board of the umbrella organisation of the sickness funds (GKV-Spitzenverband, n.d.). Hence, although indirectly involved through this umbrella organisation, it can be stated that the insured (sickness fund beneficiaries) are represented at the FJC. In practice, however, doubts have been raised as to what extent accurate and representative participation is ensured, given the decline in trade union membership, the professionalisation of governing bodies and the concentration of decision-making power at the federal level (Braun et al., Reference Braun, Klenk, Kluth, Nullmeier and Welti2008, Reference Braun, Klenk, Kluth, Nullmeier and Welti2009).

Nonetheless, initiatives such as municipal health conferences in Germany show how citizens and patient representatives can successfully be involved at the local level in Germany. Indeed, the conferences taking place in North-Rhine Westphalia (LZG NRW, 2018) and in Baden-Wuerttemberg (Baden-Württemberg, 2021) are some of the most suitable platforms to bring sports associations, educational institutions and self-aid organisations together for holistic decision-making processes on health and wellbeing (RBF and Hertie School, 2021a, 2021b). It is against this background that the political and financial reinforcement of municipal health conferences is deemed desirable for a more inter-sectoral and wellbeing-oriented approach in health policies in Germany (Hollederer, Reference Hollederer2014). However, the conferences have little political influence with hardly any law-making competence since the necessary funding for their projects is constantly lacking.

Another good practice from Germany in the participation domain is the citizen dialogues that were organised within the framework of the Neustart project. After a representative selection of participants, almost 700 citizens discussed the future of the German health system in the course of the project. Offering a platform for citizens' voice, in the two rounds of citizen dialogues, a number of citizens' demands pointed towards the governance aspects of the German health system (RBF and IKU, 2019, 2021), greater authority and involvement of patients and citizens on policy discussions being a few of them.

The literature shows that establishing a participative decision-making process entails substantial challenges. The most obvious and probably the most difficult challenge in this context is ensuring a representative participation that at the same time is not prone to exploitation by companies whose main business is to make profit (Bogs, Reference Bogs1977; Braun et al., Reference Braun, Klenk, Kluth, Nullmeier and Welti2008, Reference Braun, Klenk and Nullmeier2017; Gerlinger et al., Reference Gerlinger, Knötig, Lückenbach, Staender and Wüstrich2016). When increasing participation, elected officials struggle with the best ways to balance citizens' voice against the influence of other actors than those regarded as legitimate decision-makers by ordinary citizens (Papadopoulos, Reference Papadopoulos2007). Moreover, in participative models, it cannot be ruled out that individuals with more time and motivation, such as retired people, are overrepresented, and thus not all voices are equally heard (de Savornin Lohman, Reference de Savornin Lohman and de Savornin Lohman2000; van de Bovenkamp, Reference van de Bovenkamp2010). Hence, one of the greatest challenges of establishing a framework for the democratic participation of citizens is ensuring the representativeness of the whole population, which could reflect their needs and concerns.

3.3.3 Expert discussion outcomes

The experts recommended introducing new forms of participation at two different levels: in clinical settings (through treatment decisions) and at the population level (through self-governance, citizen committees and juries, and patient advisory boards). As for the feasible approaches for participation at the individual level, the experts suggested implementing a shared decision-making framework for healthcare provision and evaluating health outcomes through regular PREs/PROs. For enhancing participation at the population level, investing in citizens' assemblies and health conferences at the district or Länder level was found to be favourable. An unbalanced representation of citizens in such fora should be avoided by ensuring regular participation from patient and consumer representatives. However, the aim should not be to maximise their participation at all costs, but to complement and improve the existing opportunities in a meaningful way. It can be assumed that the success of participation will be higher if individuals are involved at the earlier stages of the decision-making process. The question of whether they should have voting rights on policy decisions or not remained controversial among the discussants. Regardless of this question, an informational notice about their rights and responsibilities before establishing such a set-up was deemed essential to avoid any misunderstandings. It must be made clear in advance what can be achieved with their participation and what happens after policy consultations.

In this context, the experts touched on the communication of health-related content through mass media. A large part of the technical information on health is conveyed to citizens via media channels, including social media. Given that health-related topics are usually complex, it is not surprising that their quality and comprehensiveness in media vary heavily from one outlet to another, resulting often in mis- and disinformation. Improved health literacy of (specialist) journalists can make an important contribution to improving the health literacy of the population. Enhanced health literacy with a thorough understanding of health-related issues should be considered a prerequisite for citizen participation, as also discussed earlier in Section 3.1.

3.4.1 Concept

According to Greer et al. (Reference Greer, Wismar and Figueras2016), integrity means that reasonable expectations about the roles and responsibilities of the governing organisations are met. Integrity measures work at the organisational level, focusing on rules about the use of resources that preserve the integrity of organisations. These measures aim at, among others, increasing the sense of mission and coherence of each organisation in a system. In essence, integrity can simply be interpreted as bureaucracy. It necessitates that the process of representation, decision-making and enforcement is in place within organisations. This can be enhanced by strengthening financial, personnel and administrative management.

3.4.2 Context

One of the key features of the German health system is a collaborative form of making decisions on healthcare provision in various committees, associations and umbrella organisations of the self-governing actors (Busse et al., Reference Busse, Blümel, Knieps and Bärnighausen2017). As discussed earlier, whereas the decisions on healthcare provision are taken at the federal level, hospital planning is carried out at the Länder level. Moreover, most of the Länder transferred their authority in public health services to the local authorities. Complications resulting from shared competencies at different levels and among various stakeholders lead to a lack of coordination between providers, patients and citizens (Busse and Blümel, Reference Busse and Blümel2014). Whereas the health system in Germany is considered to work well, the spending on healthcare provision is disproportionate to the health outcomes of the population, mainly due to the fragmented nature of the health governance (OECD, 2019). One solution to this unbalanced cost-benefit issue might be empowering the public health authorities as the institutions responsible for holistic health promotion activities at the local level by improving their integrity.

In practice, empowering and restructuring public health authorities necessitate shedding light on the weak points of federalism in health policymaking. Person-centred care in Germany implies first and foremost making a clear definition and differentiation of tasks, functions and responsibilities of the federal, state and local-level authorities (RBF, 2021). In particular, communication, coordination and cooperation at the local level should be strengthened by giving more authority to the municipalities and their decision-making capacity on health services. In essence, regional and local authorities that are able to assess the health needs of their communities should also be entrusted with the responsibility of taking necessary decisions on health policies without high bureaucratic hurdles.

Collaboration between key stakeholders relevant to health is important for higher efficiency, better health outcomes and increased patient satisfaction (Hildebrandt et al., Reference Hildebrandt, Pimperl, Schulte, Hermann, Riedel, Schubert, Köster, Siegel and Wetzel2015; Schubert et al., Reference Schubert, Siegel, Köster and Ihle2016; Schmid et al., Reference Schmid, Günther and Baierlein2020). Especially in sparsely populated regions, various local approaches exist to safeguard primary care. In most cases, these initiatives are based on close cooperation between districts, cities, health insurance funds, associations of physicians and, if applicable, local hospitals (KV Hessen, 2019; Hildebrandt et al., Reference Hildebrandt, Bahrs, Borchers, Glaeske, Griewing, Härter, Hanneken, Hilbert, Klapper, Klitzsch, Köster- Steinebach, Kurscheid, Lodwig, Pfaff, Schaeffer, Schrappe, Sturm and Wehkamp2020). Arguably, the collaboration and, where possible, the delegation of tasks to other complementary professional groups are even more essential at the local level as in this way the provision of services can be enabled even in underserved areas.

Some lessons can be drawn from the experiences of other European countries in the context of regionalisation of healthcare. Best practices from Italy and Spain highlight the importance of setting quality criteria at the federal level to avoid different levels of spending and quality standards across the country (Ferré et al., Reference Ferré, de Belvis, Valerio, Longhi, Lazzari, Fattore, Ricciardi and Maresso2014; Bernal-Delgado et al., Reference Bernal-Delgado, García-Armesto, Oliva, Sánchez Martínez, José, Peña-Longobardo, Ridao-López and Hernández-Quevedo2018). In essence, the literature shows that governments strive to find a balance between giving regions and municipalities sufficient leeway to meet the local needs for health, while at the same time trying to ensure similar quality standards to prevent inequalities (Fredriksson and Winblad, Reference Fredriksson and Winblad2008; Fredriksson, Reference Fredriksson2012; Bernal-Delgado et al., Reference Bernal-Delgado, García-Armesto, Oliva, Sánchez Martínez, José, Peña-Longobardo, Ridao-López and Hernández-Quevedo2018; Terlizzi, Reference Terlizzi2019).

3.4.3 Expert discussion outcomes

The central point of the discussion on integrity was to ascertain which governance issue should be decided at what decision-making level (local authorities, Länder, federal government) and to define the responsibilities of main actors at those levels. The essential element to building a person-centred health system is to ensure an inclusive approach that can bring different stakeholders and professions together for decision-making. In this context, the experts found the financial and organisational support of the government for strengthening the local public health authorities laudable. According to the government's plans, it is expected that local public health authorities will receive four billion euros over the coming years for more personnel and better (digital) infrastructure. In this way, public health authorities can gain more competencies with a better sense of mission, pointing towards better integrity. As discussed earlier in this study, concepts such as HiAP, One Health and Doughnut Cities can guide to shape their vision. Apart from providing the local authorities with the necessary means for collecting timely epidemiological data and hiring qualified staff (see also Section 3.5. below), their decision-making power should be strengthened to implement a cross-sectoral approach in health promotion, medical care, long-term care and rehabilitation services.

The experts acknowledged that the transformation of health systems towards regionalisation has its limits, especially for the tasks that are too costly for smaller units to handle alone or require cross-sectoral and inter-regional cooperation due to the complexity of health issues. Thus, the experts concluded that before a structural reorganisation of local authorities, a comprehensive, well-functioning and country-wide HIS should be established. Good communication and coordination across local authorities and Länder are essential to reduce health inequalities in Germany. Hence, although the regionalisation of healthcare is praiseworthy, certain decisions should still be taken at the federal level, such as setting quality measures for healthcare provision. Medical guidelines, quality standards and remuneration frameworks should be organised centrally to avoid disparities between the regions (see also Section 3.2. above).

3.5.1 Concept

Capacity is the ability to understand the system and how to change it, whether in terms of budgeting, legislating, managing or developing policy (Greer et al., Reference Greer, Wismar and Figueras2016). Among others, one of the mechanisms to improve capacity is passing sufficient information about the performance of the health system to policymakers to identify problems. Strategies for enhanced capacity can be used for forecasting, gathering intelligence on processes and for better research and analysis to this end.

3.5.2 Context

In Germany, the perceived risk of misuse of health-relevant data by public authorities is of high concern compared with other European countries; cultural reasons and historical circumstances shaped the strong sense of individual self-determination in data privacy matters today. However, taking the increasing proportion of the population affected by chronic diseases, rising healthcare costs and much-needed shift in the health system towards better prevention and healthy lifestyles into account, the reward of using health data more meaningfully (e.g. for integrated care and better surveillance) seems to outweigh the perceived risks.

According to the country-specific recommendations of the European Commission to Germany within the framework of the 2020 European Semester, the coordination between the providers in primary and hospital care could be improved and supported by digital tools (European Commission, 2020). Lost medical information due to lacking use of the inter-sectoral Electronic Health Record (EHR) system is found to be a major contributor to the highly fragmented and uncoordinated care in Germany (OECD, 2019). Data silos in healthcare organisations and self-governing bodies hinder the meaningful use of health data for a more patient-oriented care. Currently, apart from regular comprehensive surveillance reports of the Robert Koch Institute (RKI), self-governing bodies offer some advantages to the health system with their own technical reports and research capacities (Tennstedt, Reference Tennstedt1977; Hendler, Reference Hendler1984; Reutter and Rütters, Reference Reutter and Rütters2001), which however fail to provide relevant data in a timely manner.

3.5.3 Expert discussion outcomes

To draw on the experiences of other European countries, discussions on the capacity domain of the TAPIC framework took place with experts from the health division of an international organisation. According to the experts, the German health and social system is characterised by lacking data linkages between the sectors mainly because key organisations keep their data in individual silos. Even between ministries, crucial information gaps exist, reflecting a lack of clarity about data ownership in terms of what can be accessed by whom in the government. Moreover, information on the health status of citizens does not reflect the complete picture; health information is usually not timely and scattered in different silos, making it difficult to capture the actual health needs of the population. However, decisions on how to govern a health system require a sound and comprehensive evidence basis. Ideally, researchers, including those in the public sector, should have low threshold access to use the secondary data in the SHI, which is currently not possible in Germany.

Compared with other European countries, data security issues seem to be an overly emphasised concern in Germany. However, data sharing and data privacy are two sides of the same coin, requiring coherent and complementary policies. According to the experts, experience from other countries shows that when patients are given the opportunity, they seem to be confident to share their data with healthcare providers. For example, Finland's patient portal has been developed into one of the most visited websites after its inauguration. To gain citizens' trust in government, policies for use of data and data privacy should go hand in hand. In Germany, decisions for health data infrastructure and data security take place among separate stakeholders, jeopardising a holistic national policy to this end. The national legal basis concerning health data protection is vague and prone to individual interpretations, creating different starting points for policies developed in different organisations according to their own interests (see also OECD, 2021b). Paradoxically, although data security is one of the most articulated concerns, it is not part of any (continuous) education in the public administration system.

Moreover, the experts mentioned that the legal framework in countries may seem to be the main barrier to data sharing at first sight; this is, however, only the tip of the iceberg. Rather, the institutions that bring different datasets together and their responsible management, data access security, communication of data with the end-users (citizens) and public trust in government are the most crucial factors. Thus, the EU General Data Protection Regulation (GDPR) should not be used as an excuse for not taking political action. Indeed, GDPR allows European countries to create their own datasets and use outcomes for policy decisions while guaranteeing the protection of health data at the same time. Countries that were lagging in creating a HIS already before the adoption of GDPR have currently an even wider gap as their ‘historical heritage’.

The experts, moreover, highlighted that health-relevant data can be used in a number of ways in health systems; not only to cure illnesses but also to promote the health status of citizens. Indeed, a system cannot be improved without measuring it. To make better policies for health promotion, data should be a public good. Data collection, access and control should be centrally authorised, using pseudonymisation or anonymisation techniques that are compliant with data protection laws. Experience from other countries suggests that for better data collection, access and control, opt-out implementation models are better suited than opt-in, especially in EHRs. The fact that opt-in adoption (as in France) results in a much fewer number of EHR users than opt-out models (as in Austria) has also been stated in a comprehensive report on Germany's digital health policies (see SVR, 2021: 85–100). Arguably, data sharing is a framing issue: when communicated in a different way, the acceptance and willingness of the public to share their data will also be higher.

The European Health Union and the European Health Data Space initiatives are bold steps towards a stronger integration of European health systems, according to the experts. To make them a reality, both the technical and governance challenges in health information systems should be overcome. On the technical side, data terminology should be standardised across European countries. Only after solving this issue can interoperability and scalability would be possible. On the data governance side, a flexible framework which could be applicable to all European countries is strongly needed.