Have you ever received a piece of news from your doctor that left you feeling confused about your health, or not understanding the full implications of how this news will affect you? Have you ever had questions about your health but not the knowledge or tools to answer them?
Health literacy – the ability to find, understand and use information to make health-related decisions1 – is fundamental to ensure that we can manage health as part of our day-to-day lives, and not just when we see our doctor. Health literacy empowers us to know what questions to ask about our health and enables us to understand the reasons for a course of action or treatment, facilitating clearer communication with healthcare professionals.
Low health literacy is a widespread problem and can have a substantial negative impact on public health. It is estimated that almost one in every two Europeans have difficulty understanding essential health-related information.2 Poor health literacy is associated with:3
- A greater number of hospitalizations
- Higher mortality
- Decreased use of preventive services
- Poor self-management
- Misunderstanding of health messages
- Reduced adherence to prescribed medication
- Greater healthcare costs
Increasing health literacy provides an important opportunity to prevent health problems and can have a substantial effect on how we respond to care, recover from illness and manage long-term health conditions.
Empowering patients to manage their health
So, how do we improve health literacy? One important method is through patient empowerment, defined as a “process through which people gain greater control over decisions and actions affecting their health”.4
Empowerment happens when a patient chooses to take more responsibility for their health, and when the healthcare provider acknowledges the patient’s role in the decision-making process and encourages active engagement. Empowering patients is an important step towards facilitating patient-centric care, and is associated with improved satisfaction of care, adherence to treatment and better clinical outcomes.5 If health literacy is considered a skill, then empowerment is the behavior required to utilize this skill.
It is important to acknowledge that improving health literacy does not mean that decisions and the responsibility of health should be placed solely on the patient’s shoulders. Instead, health literacy and empowerment can be used to foster an environment of shared decision-making between the patient and their healthcare provider.
Shared decision-making is increasingly important in the current treatment landscape, as we shift away from a “one-size-fits-all” approach to care towards personalized medicine. At its core, shared decision-making is a partnership, whereby treatment decisions accommodate the knowledge and guidance of the treating physician, and are also informed by the experience, value and preferences of the patient. Underpinning shared decision-making is health literacy, and the need to ensure that the patient is well informed about their health and capable of understanding the risks, benefits and costs associated with different management strategies.
Approaching responsible patient education
Even for those who are comfortable with some medical terminology, navigating health information can be difficult when faced with advanced medical language and scientific data. Lack of familiarity with this terminology or understanding of how our bodies work can lead to patients feeling isolated, confused and even fearful following a diagnosis, as well as hesitation to access healthcare services in the first place.3,6
It is our responsibility to ensure the information we provide to patients about their health is informative and easy to interpret. Healthcare communications must be tailored to make scientific evidence accessible, but also balanced to accommodate the needs of newly diagnosed patients alongside, and those who are experts in their own disease.
Furthermore, healthcare information needs to be accurate. It is estimated that more than 50% of adult European Union citizens seek health information online.7 Despite the increasing access and utility of digital health information, the prevalence of false or misleading information online can make it difficult to determine which resources to trust. More recently, public discussion around the COVID-19 pandemic and the influence of social media taught us that online sources of healthcare information can be punctuated with misinformation and disinformation. Health-related misinformation is a barrier to health literacy that can lead to incorrect understanding of scientific knowledge, delays in accessing healthcare, divisive rhetoric and misallocation of healthcare resources.8
So, what can the pharmaceutical industry do to improve health literacy?
To facilitate effective health literacy, pharmaceutical companies need to take responsibility for providing clear and correct information to healthcare professionals and patients, equipping them with the tools to make informed decisions. Development of patient information therefore requires consistent and documented review processes to produce accurate communications that are verified prior to distribution. It is important that these review processes are rigorous, but flexible enough to allow information around diseases, treatments, clinical data, product labels, patient instructions and clinical trial information to be distilled into patient-friendly language.
Despite patients increasingly accessing healthcare information online, a lot of discussion and exchange on health still occurs in the doctor’s office. Healthcare professionals often require tools such as visual aids, digital apps, fact sheets, dedicated webpages, data charts and models to explain concepts around a particular disease or treatment. Although these aids are powerful for improving health literacy, pharmaceutical companies need to have open and ongoing dialogue with healthcare professionals to provide appropriate tools that support conversations with patients and facilitate effective patient education. Furthermore, pharmaceutical companies should monitor and engage with other platforms in which health information is being shared between patients, such as dedicated forums, disease associations and patient advocacy groups, to establish support needs.
The pharmaceutical industry has an important role to play in improving health literacy, and companies are increasingly committing to providing support for health literacy. However, in an age where health-related misinformation online has the capacity to spread rapidly and extensively, there is much more work to be done. It is important to ask how conscious your organization is about health literacy, and if there is more that you could be doing to advance health literacy and engagement with patients.
References
- Liu C et al. Fam Med Community Health 2020;8(2):e000351
- Baccolini V et al. J Gen Intern Med 2021;36(3):753–761
- Coughlin SS et al. J Environ Health Sci 2020;6(1):3061
- World Health Organization. Health promotion glossary (1998). Accessed November 2022. Available at: https://www.who.int/publicatio...
- Bailo L et al. Ecancermedicalscience 2019;13:912
- Centers for Disease Control and Prevention. Understanding Health Literacy (2022). Accessed November 2022. Available at: https://www.cdc.gov/healthlite...
- Eurostat. 53% of EU citizens sought health information online (2020). Accessed November 2022. Available at: https://ec.europa.eu/eurostat/...
- Borges do Nascimento IJ et al. Bull World Health Organ 2022;100(9):544–561