Chiara Lorini and Guglielmo Bonaccorsi
“One of the most important points is that there is now a political mandate to develop health literacy in Europe and beyond. The member states of the Council of Europe have committed to developing a health literacy program and I am sure that this will have a strong social impact.”
The Conference “Health literacy and human rights – building trust and equal access to healthcare” took place on 12 December 2023 in Rome. The event – organized by the Council of Europe in collaboration with the National Anti-Racial Discrimination Office of Italy and with the support of the Ministry of Family, Birth and Equal Opportunities and the Italian Ministry of Health – represented the opportunity to the launch of the “Health literacy guide to contribute to building trust and equitable access to healthcare”, developed by the Steering Committee for Human Rights in the field of Biomedicine and Health (CDBIO).
The Health Literacy Guide (1), available in eight different languages (including Italian), was produced by the CDBIO as part of the Strategic Action Plan on Human Rights and Technologies in Biomedicine (2020-2025) with the aim of allowing all people, including those in vulnerable situations, more effective access to health services and the ability to make appropriate decisions regarding their health. In this perspective, the Guide has been designed as an aid for decision makers, operators and health service providers to identify the needs of individuals in relation to access to services and the assumption of related responsibilities in health care, prevention disease and health promotion.
We have published posts related to health literacy several times (health literacy), highlighting its relevance as a determinant of health (read here, here and here), describing the European picture in relation to the level achieved in the different nations and the impact it can have in the redesign of healthcare organisations. Now, a further step forward is expected in the affirmation of health literacy, i.e. its importance is affirmed in the context of human rights, with significant political implications.
This perspective was born and developed starting from some fundamental documents, including the European Convention on Human Rights, the European Social Charter and, in particular, the Convention on Human Rights and Biomedicine – known as the Oviedo Convention, promulgated in 1997 (2) – which provides a framework for the protection of human rights and the dignity of the human being with respect to the applications of biology and medicine and which establishes some basic principles on which literacy healthcare finds ample cultural and applicative ground. For example, the principle of free and informed consent to undergo a health intervention (Article 5 of the Oviedo Convention) implies the need to access and understand adequate information about the purpose and nature of the intervention and its consequences and risks. In this sense, health literacy (understanding and access to information, critical thinking) is a tool and science that allows individuals to evaluate benefits and risks in order to make fully informed and conscious decisions: therefore, it is fully configured as a means for pursuing of human rights.
More generally, health literacy contributes fundamentally to safeguarding the principle of equitable access to healthcare, especially for vulnerable populations.
Along the same lines of thought, health literacy significantly contributes to achieving the third Sustainable Development Goal of the United Nations 2030 Agenda“Ensuring healthy living and promoting well-being for all at all ages“, because it is a means to allow each individual, through various forms of communication, policies, actions and organizational transformations, to access, understand and use information useful for promoting and maintaining good health.
Furthermore, it helps to build trust in health systems by enabling citizens and patients to navigate the complexities of health systems, to familiarize themselves with knowledge and methods of treatment, to evaluate information and make decisions about care and treatments.
To ensure equitable access to healthcare, there are five challenges to be faced:
access to valid health information; access to appropriate care; communication between individuals, health professionals and health authorities; sharing decisions regarding treatments and care; access to digital spaces to understand and use health services.
With respect to these challenges, the vulnerability of people and communities and, conversely, the capacity for adaptation and self-management are determined and influenced on the one hand by people’s skills and needs, and on the other by the organization of health services.
Since the guide is intended to be a document with a strong operational impact, for each of these five challenges – which represent goals that can only be achieved through the full sharing of objectives between healthcare systems and users – some Good Practices are described, born from virtuous experiences conducted in Europe and around the world. Among these, two arise from Italian experiences, created with the decisive contribution of the Florentine university research group on health literacy:
Health literacy for caregivers of older people with different levels of dependency, good practice for the first challenge, access to valid health information; to this end, the evaluation and implementation of health literacy of informal (family) and formal caregivers (family collaborators or carers) represent priority actions to achieve this objective;Healthcare workers working in retirement homesgood practice inherent to the second challenge, i.e. access to appropriate care, which is achieved through specific training on the issues of individual and organizational health literacy of operators and directors of long-term hospitalization facilities, such as nursing homes and similar.
The guide concludes with a chapter entitled “Health literacy policy, mobilization and capacity development”, which focuses on good practices and guidelines for policy development at local, regional, national and international levels. The good practices described refer to specific policies and action plans on health literacyin which objectives, responsibilities, implementation times and targets to be achieved are outlined, or to interventions developed to promote the health literacy of communities that use “agents of change” (the so-called “health literacy champions – health literacy champions”), i.e. supporters of organizational changes who enjoy the support of leadership.
From this perspective, the guide dedicates specific space to health literacy as a professional skill, and therefore to the need to train healthcare workers both during academic and post-graduate courses.
Beyond the content of the Guide and its presentation on a dedicated day – that of 12 December – its issuance represents a turning point in the recognition of health literacy as one of the priorities for health: having framed it in the areas of interest for the Council of Europe – which, let us remember, is the main organization for the protection of human rights on the continent and which, since its establishment in 1949, has created in its 46 Member States a common legal space that is based on European Convention on Human Rights (ECHR) – gives it strong political recognition. Kristine Sørensen, co-organizer of the conference as well as President of the Global Health Literacy Academy and the International Health Literacy Association, member of the group of researchers who introduced the concept of health literacy to Europe, closed the event with this statement (3) : “One of the most important takeaways is that there is a political mandate now to develop health literacy in Europe and beyond. The Member States of the Council of Europe has been engaged in developing health literacy agenda and I’m very sure it will have a strong social impact.” (“One of the most important points is that there is now a political mandate to develop health literacy in Europe and beyond. The member states of the Council of Europe have committed to developing a health literacy program and I am sure that this will have a strong social impact”). All of us, researchers and public health and public health workers, will work to ensure that this mandate is pursued in every European nation and beyond.
Chiara Lorini and Guglielmo Bonaccorsi, Department of Health Sciences, University of Florence
References.
European Council. Health literacy guidance to help build trust and equitable access to healthcare. https://www.coe.int/it/web/bioethics/guide-to-health-literacyEuropean Council. Convention for the protection of human rights and the dignity of the human being with regard to the applications of biology and medicine: Convention on Human Rights and Biomedicine. https://rm.coe.int/168007d003Conference “Health literacy and human rights – building trust and equitable access to healthcare”: https://www.coe.int/it/web/bioethics/conference-health-literacy-and-human-rights