The Health Improvement Strategy Division of the Scottish Government commissioned a proposal for 'Health Literacy - A Scoping Study' in December 2008. The main purpose of the study was to identify and examine current approaches to health literacy, and to identify options for potential policy responses on this topic. The objectives of the study were to:
a. Identify and review current definitions of health literacy;
b. Examine whether and how health literacy has been measured both in the UK and elsewhere;
c. Identify examples of policy and practice initiatives in health literacy which have been implemented elsewhere, together with information about the evaluation of their impact where these are available;
d. Map the nature and extent of relevant links between health literacy and extant and developing Scottish Government policy;
e. Identify possible options for developing programmes, policies, and / or approaches on health literacy which merit further investigation.
Study Methods and Approach
The study was conducted in two stages. Stage 1 was desk based, and consisted of a document analysis, together with online searches. Stage 2 was conducted using key informant interviews. Twenty-five interviews were conducted.
The work was designed to be conducted in a short timescale and to provide a platform from which a more detailed policy response could be developed. The document review was not intended to be a comprehensive literature review; and the key informant interviews were not intended to be a comprehensive account of all health literacy work ongoing in Scotland. Rather the work is illustrative, and provides examples of the kinds of initiatives and responses which are being tried, tested or implemented in relation to health literacy.
Findings of Stage 1
The key findings from Stage 1 are:
- There is no universally agreed conceptualisation or definition of health literacy. The term has been used in a variety of ways over the last 30 years or so. 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, and have emphasised empowerment and citizenship aspects. A useful working definition of health literacy for the purposes of this report which resonates with a public health orientation to the topic is 'the wide range of skills and competencies that people develop to seek out, comprehend, evaluate and use health information and concepts to make informed choices, reduce health risks, and increase quality of life'.
- There are a variety of tools available to measure 'functional' health literacy, but work on measuring wider aspects of health literacy is in its infancy. Despite the lack of definitive estimates, which is in part due to the complexity of developing good measures, there is agreement that there is a substantial and widespread problem of low or inadequate health literacy.
- Low health literacy is particularly prevalent amongst lower socioeconomic groups, ethnic minorities, the elderly, and those with chronic conditions or disabilities. People with low health literacy have a range of associated problems including poorer health status, greater risk of hospitalisation, less knowledge of disease management and health promoting behaviours, and less ability to self manage and to share decision making with healthcare professionals.
- Over the past 5-10 years the USA, Canada, and some other 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.
- The most relevant, comprehensive and recent review 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'.
- Health literacy is strongly linked to current policy within NHS Health Scotland and more widely within the Scottish Government. The key policy links are to health inequalities; patients rights; patient safety; self care and the management of long term conditions; anticipatory care; shifting the balance of care; eHealth; mental health and wellbeing; adult literacy and numeracy; and workforce policy and planning. Health literacy is also closely linked to the six dimensions of quality / improved care: patient centred, safe, effective, efficient, equitable and timely.
- Policy responses to health literacy could include any or all of the following: improvements to written materials; service redesign to improve the healthcare experience from the perspective of the patient; building on the adult literacy and numeracy strategy; developments to and support for health professionals to develop their competencies.
Findings from Stage 2
The key findings from Stage 2 are:
- Respondents relate strongly to the ideas underpinning the various conceptualisations of health literacy; however only a minority actually use the language and vocabulary of health literacy. There is no clear or shared view of the exact meaning of the term 'health literacy' amongst those who use it; usage varies across the spectrum from something fairly close to 'functional' health literacy to something much broader.
- 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 problems of low health literacy. The inadequate communication skills of NHS staff and health care professionals, together with the large amount of poor quality written information circulating in the NHS are thought to be some of the most important contributory factors.
- Respondents think that health literacy is strongly linked to current policy within NHS Scotland and within the Scottish Government more generally. Respondents believe that if the vision of a truly 'mutual NHS' is to be realised, then substantial improvements in levels of health literacy are required. The policy links identified include health inequalities, patients rights, patient safety, self care and self management, anticipatory care, shifting the balance of care, eHealth, mental health and wellbeing, adult literacy and numeracy, and workforce policy.
- There are many ongoing initiatives and projects relevant to improving health literacy 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; and improving the management of multiple morbidities and long term conditions.
- Respondents would like the capacity of the NHS to respond to people with literacy and health literacy deficits to be built. This could include raising awareness of the issues; better training of healthcare professionals; improvements to the quality of written materials; more support for identifying those with low health literacy; more capacity to build personal and tailored solutions for those with low health literacy; and better awareness by health care professionals of what support is available and how to access it.
- Respondents regard the improvement of health literacy as vital for delivering current policy priorities. Respondents have many ideas for new initiatives which could be pursued; however there is also 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.
- Respondents favour 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.
There are five recommendations arising from this work as follows:
Recommendation 1: There is no appetite for, or requirement for a 'health literacy strategy' for Scotland. This is mainly because the ideas underpinning health literacy are complex and diffuse. Pursuing a separate policy on health literacy would be counterproductive, and would not achieve the aim of improving health literacy across the population of Scotland. No 'policy lead' for health literacy is required.
Recommendation 2: There should instead be a focus on the practical integration of the ideas underpinning health literacy into existing programmes, projects and initiatives. This will involve the setting up of coordinating arrangements to ensure that learning is shared across the range of stakeholders, and that significant developments are tracked. The coordination will extend beyond the Health Directorates to include, for example, the work on adult literacy and numeracy.
Recommendation 3: There are a number of ongoing initiatives which will make important contributions to the development of the conceptual framework and the empirical landscape, and these should be tracked. An international study of health literacy, which will define and measure levels of health literacy across a number of European countries will take place between 2009-2011 and it will be important to follow the development and delivery of this study. Second, the National Social Marketing Centre has commissioned a study to assess the costs of poor health literacy both to individuals and society; the results of this study should be followed up. Third, a new government funded baseline study of adult numeracy and literacy in Scotland is currently being undertaken and this will provide up-to-date evidence of the scale of the more general problems of low literacy and numeracy in Scotland.
Recommendation 4: Given the wide range of ongoing relevant projects and programmes ongoing in this area, an exploratory external event on the topic of health literacy should be held. The purpose of such an event would be to increase awareness of the topic, to identify current activities, to assist with the integration of the ideas of health literacy into policy development, and to share knowledge and expertise. Such an exploratory event might usefully be preceded by an internal meeting to coordinate, share, and build understanding of the current range of activity in this area.
Recommendation 5: Given the wide ranging nature of this topic, it will be important to prioritise areas for further development, and not to attempt to tackle all aspects simultaneously.