Health Literacy has been defined by the World Health Organization (WHO) as the cognitive and social skill which determines the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good Health. This definition embraces the different perspectives and challenges of patient empowerment, not only on demanding for access to clear and correct information but also on successfully adopting healthier behaviors and maintaining them over time.

‍

Literacy in Health presents challenges related to the difficulty of conveying complex and often incomplete concepts to patients that would empower them to be active agents in their treatment. These difficulties are not only limited to the access to health information itself or in conveying it to patients. Barriers are common, even when information is formally available. This type of information often fails to elicit changes in behavior that might otherwise increase treatment and follow-up success. Notably, this happens not only with patients but also with clinicians, researchers, policy makers, and industry players.

‍

Over the last years, Healthcare organizations, such as the WHO and the Australian Commission on Safety and Quality in Healthcare (among many others), presented reports showing that weak Health Literacy competencies result in less healthy choices, riskier behavior, medication mismanagement, and more hospitalization rates. All these substantially drain human and financial resources from Healthcare systems and, as a natural result, Health Literacy has inevitably gained considerable attention across the globe in recent years. Research from around the world is quickly deepening our understanding of the vast potential that optimizing Health Literacy can have — improving Health and well-being and reducing Health inequities — especially in the complex field of rare diseases.

‍

According to EURORDIS, a non-governmental alliance of patient organizations in the field of rare diseases, it is estimated that more than 6000 rare diseases (affecting less than 1 in 2000 members of a population) may affect as many as 30 million European Union citizens throughout their lives. Due to the scarce medical expertise and the lack of responsiveness from local Healthcare systems, patients with a rare disease are often particularly isolated and vulnerable. Ultimately, these patients tend to rely on themselves to achieve a better understanding of their condition. Even though expert reference centers for rare diseases frequently exist, often patients and physicians do not know about their existence. Consequently, patients may be misdiagnosed or not have a proper follow-up. This fragmented knowledge makes it critical for investments in research, and international guidelines development, to be sensitive about the importance of fostering international expertise networks, supported by robust information systems and integrated infrastructures like biobanks and patient registries.

‍

To supplement this lack of support, patient organizations are playing a fundamental role in improving patients’ access to evidence-based information and expert care. These organizations have been providing very significant support in educating patients about their disease and encouraging them to take active participation in their own treatment. Moreover, in the past few years, several research programs are promoting patient’s participation from the earliest steps of their research, ideally leading to the design of clinical trials that best meet patients’ needs.

‍

A Science-based dialogue with all stakeholders must be encouraged to ensure that the patients’ preferences are captured in an appropriate, relevant, and unbiased way. These preferences should not only be considered in individual healthcare decision-making but also research and development decisions that are relevant to patients. As a matter of fact, in a life-threatening disease, for which a cure is not yet discovered, knowledge about the most promising treatments and how to access them can be determinant for a patient’s life.

‍

A cultural shift must, therefore, be promoted, with more investment to improve the way we provide Healthcare information to support decision-making by patients, clinicians, and policymakers.

‍

After all, Health Literacy can save lives and should leave no one behind.

‍