Health literacy and public health: A systematic review and integration of definitions and models

Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.


Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.

Self-management, a challenge for people with low health literacy that needs tailored action

People are expected more and more to play an active role in their own health care. For many individuals such role is difficult and they lack the necessary skills to do so. For successful self-management health literacy is crucial.

Every day, people are confronted with situations that involve important decisions about their health, in supermarkets, at work, at home or during health care visits. Only some of these decisions are taken in a face-to-face contact between patients and health care professionals; many more are made when people are on their own and dealing with often unfamiliar or complex information or situations. For example they have to take medicines following the prescriptions on a pill box, choose between the right foods when following a diet, monitor their symptoms or have to decide how to respond  to a severe public health outbreak like currently with COVID-19.

Health Literacy is much more than being able to read and understand. By improving people’s access to health information and their capacity to use it, health literacy is critical to empowerment.

Health literacy and its importance

To be able to take such decisions and take actions that protect and promote their health, people need the skills to find, understand and use health information. We call these skills health literacy. Health literacy broadly refers to “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (Nutbeam, D. 1998).

It has been found that nearly half of the adults in European countries have inadequate or problematic health literacy that adversely affects their health (Sørensen K. et al. 2015). Health literacy has been linked to worse individual health management (overeating, drinking too much alcohol, smoking, lack of exercise, ignoring symptoms), is often associated with a lack of understanding of health advice from public health information campaigns or medical professionals. Poor health literacy has also been shown to affect individuals’ ability to correctly follow prescription instructions for medications, and their capacity to self-manage diseases.


Dr Monique Heijmans

Monique Heijmans works as a senior researcher at Nivel – institute for health services research in the Netherlands. She is an expert in the area of (determinants of) self-management and chronic illness and has extensive research experience in research on psychosocial factors and their interaction with health behavior and health.

Health literacy is not just an individual issue

Given the poor health outcomes, it is expected that improving individual levels of literacy in society would produce substantial health benefits. Improving health literacy in patients provides the foundation on which they are enabled to self-manage more successfully and to play an active role in improving their own health. However, health literacy is not just an individual issue. People can  learn and improve their skills but also health care itself can be changed to make it simpler and more accessible for people with low health literacy. Instead of defining health literacy skills as an individual problem, we can better speak of a mismatch between the patient and the care environment (Heijmans, M. et al. 2015). By improving people’s access to health information and their own capacity to use it effectively (Rademakers, J. Heijmans, M. 2018), health literacy will be critical to empowerment.

In COMPAR-EU we will collate and distribute examples of best practice in health literacy intervention development, and provide evidence of what works, in which contexts, and why. Both on an individual level by looking which kind of interventions can empower people with low health literacy and increase their knowledge, confidence and capacity to act. But also on a health care systems level by picturing context factors that make self-management interventions more successful for people who are less health literate.