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Health Literacy - A Scoping Study: Final Report



7.1 There is no universally agreed conceptualisation or definition of health literacy. Authors from a wide range of backgrounds, disciplines, and perspectives have contributed to the debate about health literacy. The field is currently in a dynamic and developing state.

7.2 Earlier definitions concentrated on what is generally referred to as 'functional' health literacy; this is quite a narrow concept in which health literacy is seen as the ability to read and comprehend written medical information and instructions. Later definitions of health literacy have become broader, more nuanced, and more contextualised; they have emphasised empowerment and citizenship aspects, and they resonate with a public health orientation - rather than simply a clinical orientation - to health literacy.

7.3 Interviewees related strongly to the ideas underpinning the various conceptualisations of health literacy; however only a minority actually used the language and vocabulary of health literacy. There was no clear or shared view of the exact meaning of the term 'health literacy' amongst those who used it; usage varied across the spectrum from something fairly close to 'functional' health literacy to something much broader.

7.4 Moreover, interviewees used other frameworks and paradigms of more direct relevance to their own work when discussing the ideas of health literacy including risk management; information literacy; equality and diversity; patient centredness.

7.5 Measuring the extent of low or inadequate literacy, given the diffuse nature of the underlying concepts is not straightforward, and estimates of the extent of the problem of low health literacy in countries where this has been attempted vary widely. Efforts to improve the measurement of (low) health literacy are ongoing.

7.6 Despite the lack of definitive estimates, which is due in part to the complexity of developing good measures, there is agreement that there is a substantial and widespread problem of poor health literacy.

7.7 The impact of inadequate or low health literacy has both health and financial consequences. Research evidence shows that that patients with low health literacy: have poorer health status and poorer self reported health; enter the system when sicker; are at a greater risk of hospitalisation and have longer hospital visits; have higher rates of admission to emergency services and require more avoidable hospitalisation; are less likely to adhere to prescribed treatments and self care plans; have more medication and treatment errors; have less knowledge of disease management and health-promoting behaviours; are less able to self manage; have decreased ability to communicate with healthcare professionals and share in decision-making; are less able to make appropriate health decisions; make less use of preventive services; suffer stigma and shame; have poorer health outcomes including knowledge, intermediate disease markers, measures of morbidity; and will incur substantially higher healthcare costs.

7.8 Over the past 5-10 years a number of countries have adopted targets and objectives for improving health literacy within their strategic policy processes. In addition, there has been a focus over a similar timescale on international reviews of research evidence to examine what initiatives in health literacy have been tried and what the impact of these have been.

7.9 The most relevant, comprehensive and recent review (1) of the research evidence has concluded that ' initiatives designed to specifically target low literacy groups have had mixed results, with some studies showing beneficial effects on knowledge and behaviour, but there have been relatively few attempts to test the effects of these initiatives on reducing health inequalities.' The review comments that most often low literacy initiatives have involved designing or revising patient information or educational materials in order to enhance comprehension among people with health literacy problems; and in relation to written information, the review's main conclusion is that ' written information ( e.g. leaflets) used as an adjunct to professional consultation and advice has been shown to improve health knowledge and recall, particularly when it is personalised to the individual. But few other beneficial effects have been demonstrated and there is no evidence of improvement in health behaviour or health status'.

7.10 Health literacy is strongly linked to current policy within NHS Scotland and more widely within the Scottish Government. The key policy links are to health inequalities; patients rights; patient safety; self care; anticipatory care; shifting the balance of care; eHealth; mental health and wellbeing; adult literacy and numeracy; and workforce planning. Health literacy is also linked closely to the six dimensions of quality / improved care: patient centred, safe, effective, efficient, equitable and timely.

7.11 Interview respondents believe there is a widespread lack of awareness within the NHS about the extent of low or inadequate health literacy (and general literacy), and that there are insufficient resources devoted to addressing low health literacy. The inadequate communication of skills of NHS staff and health care professionals, together with the large amount of poor quality written information circulating in the NHS were thought to be the main contributory factors.

7.12 Many ongoing initiatives and projects relevant to improving health literacy are ongoing in Scotland. These cover aspects such as training on literacy, numeracy and health literacy; improving communications; improving written materials; improving access to services; eHealth; knowledge management; management of multiple morbidities and long term conditions.

7.13 Respondents would like the capacity of the NHS to respond to people with literacy and health literacy to be built. There are a range of ways in which this could be done including raising the awareness of all health care professionals of the widespread problem of low or inadequate health literacy; better training for all health care professionals in communication skills, in listening skills, and in responding to difference; improvements to the quality of written materials circulating in the NHS; more support for identifying those with low health literacy; more capacity to build personal and tailored solutions for those with low health literacy; better awareness by health care professionals of what support is available and how to access it.

7.14 Respondents regard the topic of health literacy - and the improvement of health literacy - as vital for the development of the wealthier and fairer; healthier; safer and stronger; smarter; and greener Scotland as set out by the current administration. Respondents have many ideas for new initiatives which could be pursued. However, there is also a recognition that this is a large and daunting agenda, and that it will be important to focus on a limited set of priorities in the first instance.

7.15 Respondents favoured taking an integrated approach, and adopting the ideas of health literacy into mainstream policy, practice and planning. It was suggested that this integration is already happening to some degree and should be further encouraged.