Health literacy and social change: exploring networks and interests groups shaping the rising global health literacy movement

Introduction

Health literacy empowers and drives equity (1). It entails the knowledge, motivation, and competency to access, understand, appraise and apply information to form judgement and make decisions in terms of healthcare, disease prevention, and health promotion to maintain and improve quality of life during the life course (2). Equity in health relates to the ‘absence of systematic disparities in health between groups with different levels of underlying social advantage/disadvantage – that is wealth, power or prestige’ (3). Subsequently, addressing limited health literacy calls for the provision of equal rights to accessible health information and understandable health services across different population groups (4). However, limited health literacy is a neglected public health challenge in many countries (5). To bridge the gap, various health literacy interest groups, coalitions and networks have increasingly been formed for collective actions. This study aimed to scope the formation of health literacy groups, coalitions and networks to map their existence and to discuss whether an actual global health literacy movement is under rise.

Characteristics of health literacy interest groups, networks and coalitions

A scoping study was conducted in February and March 2015 and in February 2017 with the aim to make a critical assessment of the network’s characteristics. By providing deeper insights into these developments, the findings can help demonstrate the global expansion of health literacy as a social movement.

Firstly, a search was performed on the internet using Google, LinkedIn and Twitter, for interest groups, coalitions, and networks associated with the term ‘health literacy’. Secondly, key informants in the networks were contacted to include networks that were not traceable through web-based sources. The interest group or network was included if ‘health literacy’ was part of their name or label. Hence, networks on health promotion or patient empowerment that would prioritise health literacy as a sub-part of their aim were excluded. Individuals working in the field of health literacy with established consultancies were also excluded. Subsequently, the identified groups, coalitions and networks were synthesised in Excel to make them suitable for comparison. Finally, they were categorised and analysed according to their target group, year of establishment, geographical origin, member profile and communication platform.

The assessment of networks and interest groups identified 60 entities. The year of establishment varied between 1999 and 2014. The smallest networks were Minnesota Health Literacy Partnership and Health Literacy Dallas. The largest group was Health Communications, Health Literacy, and Social Scientist Group. Twenty-one of the groups were on Facebook, 18 on LinkedIn, eight had pages or hashtags on Twitter and 23 had their own website. The majority were based in North America (6), while Europe was represented by two regional and four national networks. Health literacy networks are increasingly being developed at state levels such as, for example the Health Literacy Missouri, the UK Health Literacy Network, the Dutch Health Literacy Alliance, the Austrian Health Literacy Platform and the Danish Health Literacy Network, as well as on a regional level with the examples of the Nordic Health Literacy Network, Health Literacy Europe and the Asian Health Literacy Association. In addition, the Global Working Group on Health Literacy of the International Union of Health Promotion and Education as well as the International Health Literacy Association have been launched. The target groups included patients, researchers, private and public stakeholders as well as the general public. Furthermore, they serve various purposes such as research development raising awareness and building capacity among stakeholders.

The rise of health literacy as a social movement

Social movements are developed to impact health for different purposes (7): 1. Bring about change in the experience and delivery of healthcare. 2. Improve people’s experience of disease, disability or illness. 3. Promote healthy lifestyles. 4. Address socioeconomic and political determinants of health. 5. Democratise the production and dissemination of knowledge. 6. Change cultural and societal norms. 7. Propose new health innovation and policymaking processes. Social movements have been described theoretically to go through four different stages: emergence, coalescence, bureaucratisation, and decline (8). Hence, the 60 health literacy networks, interest groups, and coalitions were examined according to the four stages of the development of social movements. The pace of the growth varies and some groups and networks seem to be highly developed, whereas most are still in the forming phase. In North America, the Canadian Public Health Association (4), the American Medical Association (9), the Institute of Medicine (10) and the Centers for Disease Control and Prevention (11) played a pacing role. The frontrunners in Europe included the European Patient’s Forum (12), the European Health Literacy Consortium and Health Literacy Europe (5), the European Commission, and the European Office of the World Health Organisation (13,14). Likewise in Asia, the South-East Asian Office of the World Health Organisation has promoted health literacy (15) along with the Asian Health Literacy Association (16). Lastly, the Global Working Group on Health Literacy of the International Union of Health Promotion and Education (17) as well as the International Health Literacy Association are pioneers regarding the global activities concerning policy, education, research and practice (6). Generally, the scoping study revealed that a vibrant global health literacy community is developing worldwide (although to a lesser degree in Africa and South America), indicating that the collective efforts support the development of a health literacy social movement in an emerging stage. The frontrunners are pulling the movement to the next stage; for example, coalescence and bureaucratisation have started to happen in a few countries because of the wide-spread health literacy advocacy (USA and Scotland).

Previously, it has been questioned whether health literacy was merely repackaging health education (18) or a radical movement (19). According to critics, the health literacy movement has been socially constructed over time. Unlike the consumer health information movement, which developed with broad public support, the health literacy movement has been fashioned primarily from the top down, initiated by policy makers and imposed on targeted populations (20). In contrast, this scoping study indicates that the health literacy movement is predominantly shaped by professionals who firmly believe that there is a need for a systemic and social change towards better conditions for maintaining and promoting health. The public is less represented, perhaps as an impact of health literacy being the ‘silent epidemic’ (21) due to taboo or neglect; inequalities as limited health literacy affect mostly vulnerable groups (22); and lack of resources for social mobilisation among the people being affected (23).

The emerging health literacy movement is closely associated to other social movements, such as the health promotion movement (24), focusing on bridging inequalities in health to leave no one behind, as laid out in the ambitions of the United Nation’s sustainable development goals (25).

While the theory of the four stages of social movements offers some useful insight, it has limitations as well. Social movements with clearly defined political complaints and goals tend to fit well into the model, but other types of social movements may be challenging. Furthermore, social movements emerge in response to cultural and social issues, and these movements do not fit as easily into the stages of development. In addition, social movements may not develop through the stages as described, or they may skip stages altogether (8).

The study focused on the identification of networks and interest groups specifically related to health literacy; however, it should be noted that a large number of individuals, as well as institutions and organisations, have played significant roles in the agenda setting related to health literacy and the formation of a community in the first place. Since the current scoping study was conducted, more interest groups and networks have been established which are not part of this analysis, such as the World Health Organization Global Coordination Mechanism on Non-Communicable Diseases’ Working Group on Health Literacy for NCDs, the German Health Literacy Platform, and the Action Network on Measuring Health Literacy in populations and organisations.

Conclusion

This study demonstrated that the mounting development and formalisation of local, regional and global network activities indicate the emerging rise of a global health literacy movement driving social change towards empowerment and health equity. Essentially, the interest groups, coalitions and networks act as leverage to spread new ideas, language and concepts about health literacy across the world. Currently, the health literacy movement is predominantly driven by professionals aiming to improve the capacity of patients and citizens as well as inducing a change in organisations and systems to become health literacy-responsive. The future will show whether the global health literacy movement will, indeed, be successful and able to establish health literacy as mainstream, or fade out without wider social impact.