In 2012, the National Health Service in the UK published a report titled ‘No decision about me, without me’. The report made specific proposals to ensure much greater patient and consumer involvement in decisions about their health at all stages in their care. A similar sentiment is reflected in the Australian Commission on Safety and Quality’s National Safety and Quality Health Standards which include, among others, the requirement that “the health service organisation has processes for clinicians to partner with patients…to plan, communicate, set goals and make decisions about their current and future care”. The reasons for engaging patients in healthcare decision-making are compelling. Setting aside the inherent desirability of shared decision-making, there is strong and consistent evidence from more than 100 scientific studies demonstrating that involving patients in shared decision-making assists patients in acquiring greater knowledge, better understanding of risks and benefits, greater clarity about options for treatment and care. As a consequence they are better able to make informed decisions about what matters most to them. These studies involved tens of thousands of participants from widely diverse backgrounds and are generalizable to most populations.
For shared decision-making to occur, patients have to be in a position to access, understand, and act on information relevant to their health (including for example alternative options, risks, benefits, and uncertainties). Patients also need the confidence and skills to communicate verbally with healthcare professionals and express personal values and preferences. These skills are commonly described as ‘health literacy’.
A previous national survey of health literacy by the Australian Bureau of Statistics indicated that the majority of us struggle to use these skills in making decisions about our health, indicating that 60 per cent of Australians have “inadequate” health literacy. If the attractive rhetoric about shared decision-making reflected in government documents is to become a reality for more of us there is a major job to be done in improving health literacy in our communities.
For shared decision-making to occur, patients have to be in a position to access, understand, and act on information relevant to their health (including for example alternative options, risks, benefits, and uncertainties).
To transform ‘no decision about me without me’ from an aspirational sentiment into a practical reality, we need to do three things. Firstly, we have to take every opportunity to work with our patients and community members to help them increase their “health literacy” using formal and informal contacts, and digital communications. Second, we have to significantly improve the skills and capacity of health service staff to communicate more effectively; and third, we need to reduce the complexity of health information and health services organisations to make them more easily understood and accessible. This multi-level approach recognises the practical advantages of simplifying health communication but also aims optimise the usefulness of these communications by equipping consumers with the skills to engage more deeply with them.
In 2018, we formally launched the Sydney Health Literacy Lab. The Lab works with partners in the community to develop and test practical interventions to improve health literacy in a range of community and healthcare settings. For example, to increase the confidence and skills of communities, we developed and evaluated the world’s first combined health literacy and shared decision-making training program for adult learners at 23 NSW TAFE sites. A randomised controlled-trial (n=308) identified an increase in participants’ health literacy and shared decision-making knowledge and skills immediately and 6-months post-intervention. This work informed of a model of health literacy skill-development which has since been adapted for use in different community and clinical populations, including with new parents and adults living with chronic kidney disease.
Patient information materials regularly exceed health literacy recommendations and therefore are likely to be inaccessible to the patients who need them most.
Our recent work in diabetes and chronic kidney disease has shown that patient information materials regularly exceed health literacy recommendations and therefore are likely to be inaccessible to the patients who need them most. For example our study of chronic kidney disease health materials showed that over 95 per cent of pamphlets were written at a level that was too complex for patients with lower health literacy skills to understand.This matters because we know that chronic kidney disease patients often come from culturally and linguistically diverse backgrounds and may suffer from impaired cognitive function if they are receiving dialysis. This is not an isolated finding by any means; evidence from more than 300 articles published in public health and medical journals draws attention to the current gap between the literacy demands of health information materials and the skills of the intended target audience.
What can be done about it? Among other initiatives, we have recently partnered with Illawarra Local Health District to evaluate an organisation-wide health literacy approach to improve the patient information and education materials in ways that ensure they are more easily understood and provide support for practical action. Results demonstrate that organisation-wide approaches with standardised processes for staff to prepare, review and store written patient information and education materials can be successfully implemented to address the impacts and risks of low health literacy. Key to this success are standardised processes and tools for staff to obtain and use patient feedback to improve health information materials.
The formal ‘launch’ of the Health Literacy Lab in 2018 coincided with the development of a Health Literacy Hub in Western Sydney Local Health District (WSLHD); a community of practice of healthcare professionals and consumers with an interest in improving health literacy in western Sydney. The Lab partners with the Health Literacy Hub to develop, test, and scale innovative health literacy interventions and support modifications to the way the health district organises and delivers health services. This Lab/Hub model represents an unprecedented collaboration between health literacy research (University of Sydney) and healthcare services (WSLHD), which is key to delivering feasible and scalable health literacy solutions. By partnering with Western Sydney Local Health District, the Lab has the opportunity to work with some of the most socially-disadvantaged adults in Australia; Western Sydney Local Health District has the highest urban indigenous population in Australia, 47 per cent of residents were overseas-born, and one in two speak a language other than English at home. In doing so, we seek to improve health outcomes, well-being and society and promote greater equity for all.