Introduction

Health Literacy (HL) – understood as the ability to deal with health-relevant information – has gained increasing importance in Germany. Studies on population HL revealed insufficient levels of HL in the populations of many countries (Australian Bureau of Statistics 2008; Canadian Council on Learning 2008; Kutner et al. 2006; Nakayama et al. 2015; Sørensen et al. 2015), with negative effects for the health status of the population (Berkman et al. 2011; DeWalt et al. 2004; Liu et al. 2015; Svendsen et al. 2020). This development has attracted considerable political interest at the international level. The improvement of HL has become an integral part of European health strategies as well as of the global activities of the United Nations (European Commission 2007; United Nations Economic And Social Council 2009). An entire series of documents demonstrate the growing importance of HL at the international level. For example, in 2009, the United Nations highlighted the relevance of HL for health maintenance and promotion, and encouraged the development of national action plans (United Nations Economic And Social Council 2009). HL also plays a central role within the World Health Organization (WHO) and is taken into account in the framework concept ‘Health 2020’ (World Health Organization 2013) in the Helsinki Statement ‘Health in all Policies’ (World Health Organization 2014) and most recently in the Declarations of Shanghai (World Health Organization 2016) and Astana (World Health Organization 2018). At the same time, the WHO Europe is making intensive efforts to motivate its member states to commit to the promotion of HL as is shown, for example, by the European roadmap for the implementation of health literacy initiatives through the life course (World Health Organization 2019).

Moreover, during the past several years many countries have developed political strategies to strengthen HL, emphasizing the growing importance of the topic. According to the 57th WHO Health Evidence Network Report (Rowlands et al. 2018), 46 such strategies have now been developed in 19 European countries. According to a 2013 review (Pleasant 2013), the number is even higher globally. In addition, approximately ten national action plans or systematic programmes for promoting HL are now in place. The strategies and national action plans vary in content depending on the challenges faced in different countries. They also differ in their conditions of origin, background and goals, as is shown by the small number of available analyses which have compared some of these documents (Rondia et al. 2019; Rowlands et al. 2018; Trezona et al. 2018; Weishaar et al. 2019). However, their development and particularly the methodological approaches in the development and subsequent implementation of the strategies and plans are largely unclear as these topics have hardly been discussed to date (ibid.).

With our research, we would like to stimulate the debate on the development of such HL policies. We focus on national action plans as the most binding way of anchoring health objectives in the political agenda of a country, and analyse the development, structure and methodology of the National Action Plan Health Literacy in Germany as a case study. In this way, we will highlight approaches and experiences that can be transferred and could be helpful for other countries that are now developing national action plans and should be able to benefit from previous experiences.

Origins of the National Action Plan Health Literacy in Germany

HL received relatively little attention in Germany, as well as a subdued response despite initial publications (Abel and Bruhin 2003; Kickbusch and Marstedt 2008; Soellner et al. 2009). This situation only changed with the European Health Literacy Survey in 2012 (HLS-EU Consortium 2012) and especially with the first German studies on the HL of the population in Germany in 2016Footnote 1 (Jordan and Hoebel 2015; Schaeffer et al. 2016; Zok 2014). According to their results, more than half of the population in Germany have limited HL and thus experience difficulties in dealing with health information.

As in other countries, the studies caused great confusion. They clearly showed that low HL constitutes a serious public health problem (Parker and Ratzan 2010) – also in Germany – and that HL requires political attention and intervention, but it was initially unclear how this could be achieved. However, it quickly became clear that Germany, following the example of other countries, needed a National Action Plan to put the issue of HL on the political agenda.

In contrast to other countries, where the development of national action plans was initiated by politicians or the government, an independent civil society initiative was formed in Germany that advocated the improvement of the population’s HL. Initially, it consisted primarily of scientists – especially the initiators of the first HL studies. Soon after, this group took the initiative to develop a national action plan.

The development of the action plan was scheduled to be completed within two years. During this period, a group of 15 independent qualified experts held seven meetings. At the same time, working groups were established to deal with specific aspects and an office was established to monitor the work of the experts and working groups. The aim of the German Action Plan on HL was to generate greater resonance in politics, associations, health professions and research and to create a willingness to act among them. Hence, it was designed to enable a comprehensive and systematic approach, because it was clear from the outset that an efficient promotion of HL could only be achieved by building a broad alliance among all key players.

Conceptual approach and methods

The procedure of developing the action plan can thus be characterised as (a) expert-based, which should ensure a scientifically sound progress.

However, the inherent problem of a purely expert-oriented development lies in the fact that the experts’ perspective does not necessarily correspond to the one of actors in various fields of HL application and implementation or of patients, users and citizens. Under certain circumstances this can lead to difficulties in the implementation process. In addition, an exclusively expert-oriented approach and development of policies collides with the legitimate demand for stronger citizen and patient participation being more and more accepted in Germany and called for not only in health care, but also in its organisation and design (Dierks et al. 2006).

Therefore, (b) a collaborative political science approach (Ansell et al. 2017) was applied, focussing on the involvement and participation of key stakeholders, interest groups and patient representatives in policy development and implementation. In his justification of the collaborative approach, Ansell argues from the perspective of implementation and sees the cause for problems in the execution of policies in the fact that policy development and policy implementation are dealt with separately. He therefore argues that both should be integrated more closely and that key stakeholders, including citizens’ organisations – in this case patient organisations and service users – should be involved in the policy development process through collaboration and deliberation. This form of ‘collaborative governance’, according to Ansell’s assumption, can generate a broad understanding of the problem and also lead to innovative political solutions (Ansell et al. 2017; Ansell and Gash 2007; Emerson et al. 2012). Moreover, this approach should help to anticipate implementation obstacles and to circumvent or minimise them preventively, for example, by trying to create acceptance and even more than that: ‘to build a joint ownership’ (Ansell et al. 2017) (p.476).

To enable such a collaborative approach, a representative of the Ministry of Health and a patient representative were appointed to the expert group alongside experts with proven expertise. Stakeholders and interest groups should be involved through deliberation, keeping the size of the expert group manageable to work effectively in view of the tight time frame.

In practice, the envisaged methodological approach meant that the expert group first had to develop important core elements for the National Action Plan in their meetings that were subsequently discussed and debated with potential alliance partners, stakeholders and interest groups. For this purpose, two workshops and ten individual consultations were conducted. All these steps (expert meetings, workshops, consultations) were recorded in detail. The results and feedback flowed back into the further development of the National Action Plan. The evaluation of the protocols forms the empirical basis of the paper.

The methodological procedure of developing the National Action Plan was performed in the following steps (see Fig.   1).

Fig. 1
figure 1

Methodological procedure in the Development of the National Action Plan

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Scientifically sound development of the core elements of the action plan

As a first step, we analysed the international literature especially the concepts and definitions of HL. This was based on a scoping literature review carried out in advance and oriented towards the methodological framework suggested by Arksey and O’Malley (Arksey and O’Malley 2005). The results were summarised in a working paper, which served as a basis for the discussion on the concept and definition of HL in the action plan by the expert group.

The experts discussed the various definitions and concepts of HL in detail. The concept of HL has long been discussed internationally – especially in the USA – and has been further developed. While it originally aimed primarily at the literacy skills required to read and understand medical information (e.g. American Medical Association (AMA) 1999), there are numerous new approaches and definitions according to which HL is also used in health care, public health, (health) education and prevention, and many other areas, as terms such as medication literacy, food literacy or digital HL show. According to a systematic review, 250 different definitions existed when the project started in 2016 (Malloy-Weir et al. 2016).

It was therefore inevitable for the expert group to agree on a definition and, by this, come to an internationally compatible understanding of HL that is clearly distinguishable from other concepts and also from other discussions taking place in German-speaking countries. The expert group discussed the different perspectives of the concept in-depth and addressed the terminological difficulties associated with translation. In Germany, HL is translated into ‘health competence’, an often misleading term. Such misunderstandings also played an important role in the expert group at the beginning of the project and received much attention in the early stages. The same applies to the localisation of the concept in the German public health discussion. Experiences from other countries show similar results; extensive and sometimes strenuous discussions of the concept also took place in the beginning (see Weishaar et al. 2019).

The group agreed to refer to the concept and definition by the HLS-EU (Sørensen et al. 2012; HLS-EU Consortium 2012), especially since most studies that were conducted in Europe (also in Germany) are based on it. According to this definition, HL includes the necessary literal, motivational, cognitive and social skills required for dealing with health information, relevant for decision-making or maintaining and promoting health. The definition is intentionally broad and seeks to reflect a comprehensive understanding of HL (Sørensen et al. 2012).

The experts also carefully examined the ‘relational character’ of HL, because HL is not only determined by personal skills but is also significantly influenced by the demands and complexity of living environments and systems (Parker and Ratzan 2010). In this context, it was agreed to pay special attention to this aspect in the action plan and to consider it in the recommendations, in other words, to always strengthen not only individual HL but also systemic and organisational HL.

Analysis of available international action plans

In a further step, a review of existing national action plans was conducted. It was also based on a preparatory literature search in two international scientific databases (PubMed, Web of Science) and the German Education Research Portal (FIS). In addition, relevant websites and Google scholar were searched manually. Based on this research, 57 strategies on promoting HL were identified. Another survey of HL experts identified four additional strategies. All in all, our research resulted in 61 HL strategies and action plans (Weishaar et al. 2019), seven of which were identified as relevant for the German plan, including plans from Australia (Australian Commission on Safety and Quality in Health Care 2015), British Columbia/Canada (Public Health Association of British Columbia 2012), England (Public Health England 2015), New Zealand (Ministry of Health 2015), Scotland (Scottish Government 2014), Wales (Puntoni 2010) and the USA (U.S. Department of Health and Human Services, Office of Disease Prevention and Heath Promotion 2010). These were then summarised as tables in a synopsis, which served as a basis for the experts to discuss the relevance of these action plans for Germany.

Discussion of empirical studies on HL in Germany

Therefore, a discussion by the expert group on the available empirical evidence for Germany followed as a third step. This was also done based on working material prepared beforehand, in which the available findings were summarised for the expert discussion. The surveys, especially the representative study on the HL of Germany’s population (HLS-GER), helped defining core elements as well as concrete recommendations in the National Action Plan. Although research was still in its very early stages when the National Action Plan was drawn up, the five studies available at the time provided impressive evidence of the importance of promoting HL (HLS-EU Consortium 2012; Jordan and Hoebel 2015; Quenzel and Schaeffer 2016; Schaeffer et al. 2016; Zok 2014).

These studies revealed that HL of Germany’s population is insufficient, that the ability to access, understand, appraise and apply health-relevant information needs to be improved. According to the study on the HL of the German population (HLS-GER), 54.3% of adults possess insufficient HL (Schaeffer et al. 2016; Schaeffer et al. 2017). The studies also indicate social inequalities, with some population groups having significantly lower levels of HL than the general population. These include people with a low level of education and socio-economic status, older people, people with a migration background and people with chronic diseases (HLS-EU Consortium 2012; Jordan and Hoebel 2015; Schaeffer et al. 2016; Schaeffer et al. 2017; Zok 2014).

This social gradient requires special attention in the context of the health effects of poor HL. According to studies and in line with international findings (Berkman et al. 2011; DeWalt et al. 2004), poor HL is associated with less participation in health-promoting and preventive measures, an unhealthier lifestyle, bad eating habits, less physical activity and more intensive use of the health care system (emergency departments, hospitals or doctors) (ibid.).

Particular difficulties of German adults when dealing with information were observed in the fields of prevention and health promotion. Thus, it was decided to pay special attention to HL in the personal environment and everyday life and to focus on these issues with the first recommendations of the action plan.

For many people dealing with information in the field of health care is also associated with high demands making informed decisions and participation in treatment and care are more challenging. Despite numerous reforms implemented in recent years, the study exposes many users struggle when navigating Germany’s complex health care system. A user-friendly and health literate health care system should therefore also play a central role in the action plan.

Studies show that people with chronic diseases face special challenges when dealing with health-relevant information. At the same time, people with chronic diseases are particularly reliant on sufficient HL due to the complexity and long-term nature of their illnesses. The action plan should therefore pay special attention to this vulnerable group and the multiple physical, psychological and social implications of chronic diseases.

The state of research on HL in Germany was also criticised as needing improvement. The experts decided to address this demand in the National Action Plan.

Definition of the core elements of the action plan

Consequently, the experts agreed to focus on four thematic priorities – referred to as action areas – in the National Action Plan and to draw up a set of five recommendations for each of these areas, specified in sub-sections. The experts also agreed that half of the recommendations should focus on the promotion of personal HL and half on changes in the environment.

The recommendations were developed in working groups. In a first step, broad subject areas were defined, further developed and condensed in intensive discussions with the entire group of experts.

Since certain crosscutting issues were quickly identified equally relevant in all areas of action, it was decided to consolidate them into guiding principles that should always be observed during implementation.

Collaborative development of the action plan

In order to allow for a collaborative approach in preparing the National Action Plan, two workshops with stakeholders and interest groups and ten complementary individual consultations were held to discuss the core elements and to lay the foundation for future cooperation alliances (see Fig.   2).

Fig. 2
figure 2

Collaborative further development of the National Action Plan’s core elements

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In a first workshop, the experts discussed the core elements outlined above in small groups with 60 important stakeholders and associations from the health care system, the education system and members of the Alliance for Health Literacy – an alliance consisting of the Federal Ministry of Health, the Conference of Health Ministers from the federal states, patient representatives and leading organisations of the German health care system for promoting HL – initiated by the Federal Minister of Health in 2017 (Bundesministerium für Gesundheit 2017). The discussion in each of the groups was guided by three core questions:

  1. 1.

    Has the importance of the field of action for Germany been adequately defined?

  2. 2.

    Which fields of action should be at the centre of the action plan?

  3. 3.

    Which actors and partners can promote these lines of action?

A second workshop was specifically addressed to self-help and patient organisations, asking them to comment upon and add to important points from their perspective. The questions mentioned above were discussed and challenges arising from the patients’ and users’ perspective were examined.

The feedback and suggestions received during the workshops were then integrated into the further development of the National Action Plan.

Additional consultations

In addition, ten similar consultation meetings were organised. They were conducted as a combination of individual discussions with stakeholders and consultations with existing forums and working groups. The aim was to explore as many different perspectives on the topic of HL as possible, to lay the foundation for future collaboration alliances and to promote commitment and the willingness to act.

The common goal in all these steps was to establish collaborations with important alliance partners, to integrate different perspectives and to overcome existing reservations, since the concept of HL, yet unknown in Germany at the time, was also met with scepticism in some areas of practice. The group tried to resolve these and other misunderstandings and to convince the actors involved of the need to promote HL, to create identification and, if possible, joint ownership (Ansell et al. 2017) with the action plan, thus establishing a motivational basis for its subsequent implementation.

The workshops not only contributed to the clarification of these points, but also broadened perspectives. For instance, especially the patient associations emphasised the risk of focusing too much on the promotion of individual competences. For them as for other organisations, it was important to clearly highlight the relational character of HL in the Action Plan and the importance of health-literate structures. The fact that they were able to stress these aspects in the cooperative workshops and to achieve a stronger emphasis on the importance of structural and environmental interventions had an enormous impact in alleviating reservations and increasing the willingness to cooperate.

Revision, finalisation and publication of the plan

Subsequently, the National Action Plan was reviewed and recommendations were refined. The numerous suggestions received during the workshops and interviews were carefully examined and incorporated as far as possible, following a concluding consensus and finalisation within the expert group.

At the same time, an Internet platform (www.nap-gesundheitskompetenz.de) was set up to inform about news on HL and the National Action Plan, and to report on activities initiated in connection with it. It has since become a key source of information about the National Action Plan.

A public briefing on the introduction and presentation of the National Action Plan to the Minister of Health followed. The event intended to address policy makers and key stakeholders. The Plan should be introduced, discussed in panels with important representatives of the respective field of action and presented to the acting Minister of Health.

The event received a very positive response. This, as well as the high number of visitors and the media presence, is evidence of the high level of interest shown in the action plan. The same applies to the sharp increase in the number of requests for talks and the expressions of interest in cooperation. The numerous downloads from the website and the number of enquiries at the office also show the willingness to deal with the National Action Plan and the topic of HL.

Results

The structure of the National Action Plan Health Literacy in Germany (Schaeffer et al. 2018) is similar to other plans. It starts with a short section on political and social relevance, followed by a concise presentation of definitions and concepts, and a description of the most important empirical findings. The core consists of the four areas of action and the 15 developed corresponding recommendations (see Fig.   3).

Fig. 3
figure 3

Fields of action and recommendations by the National Action Plan Health Literacy in Germany (Schaeffer et al. 2018)

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The first field of action refers to the promotion of HL in all areas of everyday life. Recommendations therefore focus on the education and training system, working and professional life, nutrition and consumption, media and the community.

The second field of action focuses on the health care system and health care provision. The overall aim is to implement HL as standard in all areas of the health care system, to facilitate navigation, increase transparency and reduce administrative barriers, to improve information and to facilitate participation.

The third field of action addresses living with chronic illness. Recommendations in this area aim to provide competent health care for people with chronic illness, enable the chronically ill to deal competently with the disease and its effects, improve self-management and HL skills of people with chronic illness and their relatives and promote HL for coping with everyday life.

The fourth field of action aims at the systematic expansion of research on HL. One of the proposals is to measure population HL on a regular basis and to examine individual, societal and organisational determinants of HL to enable the development of evidence-based interventions.

For the implementation of the recommendations, the sub-sections contain concrete proposals, name relevant actors and provide illustrative examples.

The action plan concludes with five guiding principles to be considered when implementing the action plan and promoting HL. These include: (1) to pay special attention to reduce social and health inequalities; (2) to consider the relational character of HL and to always include individual and structural conditions; (3) to create opportunities for participation and user involvement; (4) to make use of the opportunities created by increasing digitalisation; (5) to promote HL in a comprehensive and collaborative manner, and to involve actors from all sectors of society (Schaeffer et al. 2018).

Discussion

Compared to other countries, Germany has a very efficient health care system and spends a relatively high proportion of the gross national product on health, but, according to the relevant OECD and WHO data, the country does not achieve top results, especially in terms of life expectancy (OECD 2019; Statistisches Bundesamt 2019). This is partly due to the increasing complexity and fragmentation of the system and the associated deficits in coordination, communication and information between health professionals, service providers and users, i.e. patients. In view of a rapidly aging population and the related continuing increase in the proportion of people with chronic illness, this situation has become a major problem for the health care system.

This is also reflected in HL studies, revealing that the population in Germany faces difficulties when dealing with the challenges of communication and information and that their HL is insufficient. Although low HL affects the entire population and all social classes, clear social inequalities exist. Certain population groups are particularly affected by low HL levels and have trouble coping with the demands of communication and information in the health care system, dealing with the flood of digital information and using information to maintain their own health. Strengthening HL therefore requires considerable political and social attention (World Health Organization 2019).

To stimulate this, a national action plan has been developed for Germany, following the example of other countries. It presents a broad programme for promoting HL in various fields of action. The following findings were obtained from the present case study:

  1. 1.

    The development of the National Action Plan Health Literacy in Germany is an example of how a relevant political programme development can also be performed by a civil society initiative. In Germany, the development of the National Action Plan was not prepared by a commission officially appointed by the government, as in most comparable countries, but by a group of committed actors. This approach has ensured the independence and neutrality of the National Action Plan. However, this approach carries the risk of political distance and weak political support. This risk was circumvented due to the early acceptance of patronage by the Federal Minister of Health. This gave the initiative a certain legitimacy and prevented it from becoming an honourable but neglected niche project. The Minister’s conviction of the importance of the topic provided the foundation of the ‘Alliance for Health Literacy’ (Bundesministerium für Gesundheit 2017) shortly before the Action Plan’s publication, bringing together the umbrella organisations of the health care system to promote HL. Representatives of the National Action Plan are permanent guests of the Alliance for Health Literacy and available for consultation. The National Action Plan thus hit the ground running.

  2. 2.

    This is also confirmed by the great interest the National Action Plan received in the run-up to and during the presentation event. It also proves that, with the development of a national action plan, an instrument has been selected which marks an important step in framing (Weishaar et al. 2019) and agenda setting – both important for the formation of policy fields. This is also demonstrated by the fact that the promotion of HL was included as an objective in the federal government’s coalition agreement shortly afterwards (Deutscher Bundestag 2018) and also incorporated in the resolution of the 91st Conference of Health Ministers (Gesundheitsministerkonferenz 2018) (for the implementation see Schaeffer et al. 2020).

  3. 3.

    The expert-oriented and collaborative approach has contributed significantly to the success of the National Action Plan. It has allowed for an evidence-based health policy development (Gerhardus 2010) and a concentrated elaboration of the action plan, as well as the deliberative involvement of many actors, stakeholders and interest groups, primarily from the health sector and to a certain extent from the education sector. Through this involvement, they became convinced of the importance of the topic and began initial action. Reservations about the concept of HL could also be dispelled. Initially, some stakeholders and patient and citizens’ organisations had difficulties with the HL concept relatively unknown in Germany at the time. It was perceived as unwieldy in the German debate on public health, partly because it clashed with the intensive debate on health promotion that had been going on for years. The HL concept thus fell on ‘sensitive ground’, which required extensive efforts on clarification. It was not given sufficient attention at the beginning – a mistake that needed correction, especially since new concepts, such as innovation in general, often meet with reluctance and opposition in the beginning (Schaeffer 1991; Zapf 1994). If such are not taken into account adequately, they can quickly become obstacles that make implementation more difficult at a later stage. This is also confirmed by the experiences with HL in other countries (Weishaar et al. 2019). Future initiatives will need to address this issue from the outset.

  4. 4.

    The involvement of important actors in the development of the action plan has also enabled us to start building a network of cooperation and alliance partners made up of key stakeholders, organisations and interest groups. Such networks are indispensable for agenda setting and implementation. Moreover, it has been possible to link up ‘policy development and policy implementation’ to a certain extent (Ansell et al. 2017) and to establish a basis for implementation.

  5. 5.

    This is important because the high degree of media attention that action plans in Germany usually receive, often fade after a while and is generally not stable over time. To achieve sustainable effects, effective and broad networking is also essential. However, it requires considerable time, as well as human and financial resources, both not available to the civil society project to the extent required. Retrospectively, the estimated time frame and number of meetings for the development of the plan proved to be too limited. Preparation of recommendations also proved to be very time-consuming and would not have been possible without the intensive support of the coordination office. This shows once again that it is important to allow for sufficient leeway in such development processes. This also applies in terms of finances and personnel to perform not only the necessary networking activities, but also the necessary communication and public relations work.

  6. 6.

    Although the action plan emphasises the crucial importance of promoting HL in all areas of life and living environments, it focuses on the health care system. It is worth considering whether the education and training system might have deserved more attention (Vamos et al. 2020). The same applies to the rapidly advancing digitalisation, the central focus of Portugal’s recently published action plan (Silva Costa et al. 2019). This should be considered when the action plan is revised or further developed.

Conclusion

Our analysis has provided insights into the development process of a national action plan and thus a process of policy development. It is characterised by special features, as the German action plan is based on a civil society initiative, i.e. follows a bottom-up strategy and an expert-based as well as a collaborative approach. As a whole series of national action plans have been developed and more are currently in the pipeline worldwide (e.g. in Belgium; Rondia et al. 2019) or in the European Region (World Health Organization 2019) it is time to intensify the exchange on development strategies and the impact of such plans and other policy strategies to improve HL. In addition, it is becoming increasingly important to start debating on the central issues that need to be considered in the promotion of HL across national borders, and that should be incorporated into policy programmes alongside country-specific aspects. With our case study, we wanted to contribute to these issues.