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Health Literacy - A Scoping Study: Final Report

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ANNEX 3 FINDINGS - STAGE 1

1. The findings of Stage 1 of the scoping exercise are organised in 6 sections as follows:

  • Definitions of Health Literacy
  • The Measurement of Health Literacy
  • The Impact of Inadequate or Low Health Literacy
  • Policy and Practice Initiatives to Improve Health Literacy and their Impact
  • The Nature and Extent of Links between Health Literacy and Scottish Government Policy
  • Possible Options for Development

2. Note that early on in the development of the material for Stage 1, a highly relevant - and recent - publication was unearthed (1). The Picker Institute was commissioned by the Health Foundation, under their Quest for Quality and Improved Performance ( QQUIP) initiative to produce an overview of the research evidence on the 'effectiveness of patient-focused 21 interventions'. Seven areas - one of which was improving health literacy - were identified for review. Chapter 1 of the review report, which was published in August 2006, is entitled 'Improving health literacy', and this material has been drawn on in what follows, especially in the section which sets out the findings in relation to 'Policy and Practice Initiatives to Improve Health Literacy and their Impact'.

Definitions of Health Literacy

i) Background

3. The term 'health literacy' was first used in 1974 (1), and the field of health literacy emerged properly in the 1980s and 1990s (2). Issues in the conceptualisation and definition of health literacy have been developed, summarised and synthesised by a range of authors (1-11).

4. This is a complex field, and 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. Moreover, the debate is highly topical, and a number of substantial contributions to the development of ideas in this field have been made in the last few years. Thus the field is currently in a dynamic and developing state.

5. Whilst acknowledging this complexity, this report attempts to clarify (and to simplify) these ongoing debates in order to provide a framework within which - in the context of current Scottish Government thinking - progress towards a policy response can be made. Paragraphs 6-21 below therefore summarise - in simplified form - the ways in which the topic of health literacy has been conceptualised and defined.

ii) Early Definitions

6. Earlier definitions concentrated on what is generally referred to as 'functional' health literacy; this was quite a narrow concept in which health literacy was seen as the ability to read and comprehend written medical information and instructions.

7. It is important to recognise that functional health literacy does not - in any definition - equate simply with the ability to read. Functional health literacy is not necessarily related to years of education or to general reading ability; a person who functions adequately at home or work may have marginal or inadequate functional literacy in a health care environment.

8. To be more specific, as articulated by Pleasant and Kuruvilla (2), functional health literacy has usually been defined and articulated within the context of the specific, individual, clinical encounter. The authors say '... This clinical approach to health literacy developed mainly within the US to help physicians better communicate their prescriptions and to help patients better understand and comply with treatment regimes. This work tends to characterise health literacy as a problem that patients have and physicians need to overcome'.

9. The US Department of Health and Human Services ( DHHS) definition of health literacy also fits fairly well with this idea of functional health literacy, although by referring to patient decision making the concept is already starting to be extended. The USDHHS definition is ' the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions' (12).

iii) Broader Definitions

10. More recently, definitions of health literacy have become broader, more nuanced, and more contextualised. For example, the Institute of Medicine (13) divides health literacy into functional skills (such as speaking and listening), print literacy, and cultural and conceptual knowledge. Health literacy is seen as the 'bridge' or 'mediator' between individuals and health contexts, the health care system, the education system, and broad social and cultural factors at home, at work, and in the community.

11. The World Health Organisation ( WHO) definition (7) emphasises the empowerment aspects of health literacy using the definition ' 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'. The WHO also says that health literacy ' means more than being able to read pamphlets and make appointments' but rather ' implies the achievement of a level of knowledge, personal skills and confidence to take action to improve personal and community health by changing personal lifestyles and living conditions.'

12. A similar definition is used by the Australian Bureau of Statistics when it defines health literacy as ' the knowledge and skills required to understand and use information relating to health issues such as drugs and alcohol, disease prevention and treatment, safety and accident prevention, first aid, emergencies, and staying healthy' (14).

13. The National Social Marketing Centre ( NSMC) ( www.nsms.org.uk) vision of health literacy takes a broadly similar approach. The NSMC view is that health literacy is ' part of a set of ideas that considers the interests of the citizen to be paramount, that empowers consumers and that enables ordinary people to take greater control over the factors that influence their health and wellbeing'.

14. This broader definition of health literacy and the role of health information and education in bringing about improved health literacy is emphasised by Nutbeam, one of the most longstanding and influential writers in the field of health literacy, who proposes that there are three levels of health literacy (15): functional (basic skills in reading and writing to be able to function in a health context); interactive or communicative (more advanced cognitive, literacy and social skills to actively participate in health care); and critical (the ability to critically analyse and use information to participate in action to overcome structural barriers to health).

15. These definitions extend to their broadest when they enter the political realm. For example, Kickbush (16) gives a definition of health literacy which involves understanding peoples' rights as patients, acting as informed consumers, and acting individually or collectively to improve health through the political system. This more overtly political analysis is also illustrated by Maddox (17) who discusses how many people, rather than acting on their own, share (health) literacy tasks with others. She therefore hypothesises that (health) literacy skills don't only reside in individuals but in groups of people, for example families. (And in that sense, a person's (health) literacy can be seen to go beyond his or her own skills.)

16. This idea is taken even further by Papen and Walters (18) who describe a study in which the relationships between literacy, learning and health were examined in the context of adults for whom English was a second language and / or adults who were attending literacy courses. They found that writing things down in preparation for consultations, taking dictionaries on visits to the doctor, reading leaflets whilst drawing on prior experience and knowledge, checking family medical books, and doing research on the internet were used by students as strategies to cope with difficulties they faced when engaging with the health-care system. Some of the demands of reading and understanding were resolved through using other people who were better able to read and understand [English] texts, who had an understanding of certain diseases, or who were more familiar with the working processes and structures of the health system. (Note that this process is known as brokering or mediation; brokers or mediators might be friends, family, key workers or health professionals.)

17. Two further broader definitions which are fairly up-to-date and which have currency and influence are included here to help further the overall understanding of the concept of health literacy and how this has developed through time. First, Zarcadoolas et al (19) define health literacy as ' 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'. Second Kickbush and Maag (20) use the definition of ' the ability to make sound health decision(s) in the context of everyday life - at home, in the community, at the workplace, the health-care system, the market place and the political arena. It is a critical empowerment strategy to increase people's control over their health, their ability to seek out information and their ability to take responsibility'.

iv) The 'Public Health' definition / conceptualisation of Health Literacy

18. These broader definitions resonate with a public health orientation - rather than simply a clinical orientation - to health literacy. The public health approach explicitly connects health literacy with health promotion and the social marketing of public health interventions, and connects health literacy as an issue equally important in the public sphere as in health care settings.

19. This broader approach also makes clear that to understand health literacy requires an understanding of context: this includes the individual's personal background, the social and institutional practices of health care (including the relationship between doctor and patient), the cultural practices of looking after one's health, as well as the emotional aspects of dealing with ill health.

20. An alternative narrative on the trajectory for these definitions is given in the Institute of Medicine's report (13) where the development is described as being from the 1970s when the concept of health literacy had a focus on the individual (functional health literacy), through to the year 2000 where the focus shifts to health systems (and the tripartite model of functional, interactive and critical health literacy especially as articulated by Nutbeam), through to 2006 when the concept moves to a more community focus through the multiple literacies models promoted by for example Zarcadoolas (19).

21. Finally, a very recent article by Nutbeam (21) sets out the two different roots of the concept of health literacy - the concept in clinical care, and the concept in public health. The paper describes the two distinctive concepts that reflect health literacy, respectively as a clinical 'risk' or a personal 'asset'.

The Measurement of Health Literacy

i) Background

22. It is clear that the broad range of definitions of health literacy as summarised above create some challenges when it comes to measuring levels of health literacy. This is because the varying definitions arise from different conceptualisations of health literacy; and the ways in which health literacy is both conceptualised and defined have implications for its measurement. If health literacy is defined narrowly as the kind of 'functional health literacy' then one set of measures are appropriate; however, if a broader view of health literacy is taken then the measurement will be required to reflect these broader skills and aspects.

23. A helpful discussion of these measurement issues is contained in the 2006 paper by Baker (22). In essence it is argued that if the definition of health literacy adopted focuses on individual capacity only (aspects such as reading fluency and prior knowledge in the form of vocabulary and conceptual knowledge of health and health care), then there are measures available which can be used. However, if the definition adopted is broader, then information about the individual's environment ( e.g. the health care system and context, the complexity of spoken and written messages, public health messages) as well as information about culture and social norms would also need to be captured and measured. The development of measures to capture these broader aspects is a new field and no consensus yet exists as to how this should be done.

24. The National Social Marketing Centre reports on its website that they are currently undertaking an EU supported research study to assess levels of health literacy in a number of European states. The website states that '... The survey will seek to define and measure for the first time, levels of health literacy across nation states in Europe'.

ii) Measuring Functional Health Literacy

25. There are a variety of tools available to measure functional health literacy, although most of the work in this area has been undertaken in the US and the tools do not necessarily translate effectively into a UK context.

26. For example Jochelson (3) lists four tests which are / have been used frequently to measure functional literacy, numeracy skills, and health literacy: The Rapid Estimate of Adult Literacy in Medicine ( REALM) is a 3-5 minute test that is used in health care settings to estimate adult literacy; The Test of Functional Health Literacy in Adults ( TOFHLA) which takes 22 minutes to administer and the short version S- TOFHLA which takes 7-10 minutes; The ( US) Health Activities Literacy Scale ( HALS) based on the National Activities Literacy Scale; and the Newest Vital Sign which is a three minute test (23).

27. The scale of the problem - even on this fairly narrow definition - as estimated in the US and elsewhere is sobering. Jochelson's review states that ' the US National Adult Literacy Survey of 1992 found that 51% of the adult population had serious problems with reading or basic arithmetic or very basic functional literacy and numeracy skills (24). In Canada 48% of adults fell into the two lowest literacy levels of marginal and inadequate literacy (25).' The US Department of Health and Human Services (26) estimates that only 12% of US adults have proficient health literacy.

28. The Australian Bureau of Statistics (27) reports that in 2006 60% of adults aged 15-74 do not have adequate health literacy.

29. A recent survey in England showed that about 16% of adults have literacy skills lower than that of an average 11 year old and 47% of adults have similarly low levels of numeracy (28), whilst an estimated 800,000 adults in Scotland are thought to have difficulties with reading, writing and numeracy 22. These Scottish figures will be updated later in 2009 when the Scottish Government reports the results of a baseline study currently being undertaken by Glasgow University. A UK study of health literacy which reported in 2007 (29) found that 11% of participants had marginal or inadequate health literacy; and that the older participants were disproportionately affected.

30. As has been illustrated in Paragraphs 5.26-5.29 above, quantifying the extent of the problem - even on a fairly narrow definition of health literacy - is not straightforward, and estimates of the extent of the problem in the countries where this has been attempted vary widely. Nonetheless, even on the most conservative estimate, it can be seen that there is a substantial problem to be addressed.

iii) Measuring Broader Aspects of Health Literacy

31. The work on measuring wider aspects of health literacy is in its infancy. Jochelson's 2008 review (3) states that ' no tools that go beyond this [functional health literacy] to lifestyle behaviour exist. No published studies were found that attempt to develop criteria to test the conceptual and empowerment definitions of literacy.'

32. The searches undertaken for this review have uncovered a small number of emerging programmes of work in this area. For example in 2007, when the initial results from the International Adult Literacy and Skills Survey was published by the Canadian Council on Learning (30), it identified 5 distinct dimensions of health literacy which reflected improved methods for measuring broader aspects of health literacy. These were:

a. health promotion measures (to capture an individual's ability to enhance and maintain health by locating and using health information);
b. health protection measures (to capture an individual's ability to safeguard individual or community health by reading information or participating in referenda);
c. disease prevention measures (the ability to take preventive measures and engage in early detection);
d. health-care maintenance measures (the ability to seek and form a partnership with health care providers to follow directions or discuss alternative treatments); and
e. system navigation measures (the ability to understand and to access needed health services).

However, as pointed out by Baker (11) this type of scale takes 30-40 minutes to administer and is not always straightforward to interpret.

33. Moreover, Pleasant and Kuruvilla (2) have recently (January 2008) reported an initial attempt to create a measure of the 'public health approach' to health literacy. A scale of 16 statements, each of which is either True of False ( e.g. overall, vaccination has more risks than benefits; using condoms when having sex can prevent the spread of AIDS; exercise helps prevent heart disease) was developed to test out this public health approach to health literacy. The initial findings from this work were surprising (health professionals scored lower than lay people) and more work is required to produce a reliable, valid scale. However, there is an appetite to do this and the substantial measurement challenge is very much 'work in progress'.

iv) Measuring Health Literacy in Scotland

34. It is clear from the discussion above that there are no easily available 'off the shelf measures' which can be applied in Scotland. General literacy is of course vital for all aspects of life, and indeed, one of the Performance Indicators in the Government's Performance Management Framework is to reduce the number of adults of working age with low levels of literacy and numeracy (31). However, whilst comparisons on general literacy may be interesting they do not necessarily translate in a straightforward way to the broader concepts. It is very likely that the levels of inadequate health literacy in Scotland are high.

35. The recently commissioned (by the Health Analytical Services Division) 'Better Together - Inpatient Survey' asks a few questions about ease of access to services and satisfaction with services 23, but the questions have not been designed specifically to test health literacy.

v) Which Groups have Low or Inadequate Health Literacy?

36. A range of groups have been identified as experiencing disproportionately low or inadequate health literacy. These are people with chronic physical or mental health problems (32), those with lower levels of educational attainment - especially those who are older and whose parents had lower educational attainment, (33, 34). Although health literacy does not straightforwardly correlate with other inequalities in health, low health literacy appears to be particularly prevalent among lower socioeconomic groups, ethnic minorities, the elderly and those with chronic conditions or disabilities (1).

vi) Is there a Good Screening Test for Health Literacy ?

37. One possible policy approach to the issue of health literacy - especially in the clinical rather than the public health context - would be to look at the evidence about whether it is possible to screen for health literacy - and thence to offer support to those who have inadequate or low health literacy.

38. As might be expected, on this as on so many questions in this complex field, there are differing views on whether a good screening test has been, or could be developed. According to Nutbeam (8), ' a strong science is developing to support screening for poor literacy skills in clinical care and this is leading to a range of changes to clinical practice and organization'. [Note that Nutbeam is talking about general literacy skills here, not health literacy.]

39. However, by contrast, according to Baker (11) ' ..... It remains unclear whether it is possible to develop an accurate, practical 'screening' test to identify individuals with limited health literacy.' He goes on to say that '... Even if this goal is achieved it remains unclear whether it is better to screen patients or to adopt a 'universal precautions' to avoid miscommunication by using plain language in all oral and written communication and confirming understanding with all patients by having them repeat back their understanding of their diagnosis and treatment plan.'

40. In Scotland currently the introduction of the Keep Well 24 initiative (formerly known as 'Prevention 2010') has provided an opportunity to include literacy screening and referrals within a mainstream service. A recent evaluation of this has been commissioned by NHS Greater Glasgow and Clyde ( NHSGGC) to provide NHSGG&C staff baseline information for the development of literacy awareness, screening and referrals within the area. 25

The Impact of Inadequate or Low Health Literacy

41. A range of studies have looked at the impact of inadequate or low health literacy in terms of both health and financial consequences (1, 3 , 12, 26, 33, 34, 35, 36, 37, 38). This research has reported 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. As reported by DeWalt et al (37) patients with low literacy were generally 1.5 to 3 times more likely to experience a given poor outcome.

42. The National Social Marketing Centre is currently conducting a study to assess the costs of poor health literacy both to individuals and society. [Note that the only financial costings which have been found to date have been produced from within US. The figures run into billions of dollars.]

Policy and Practice Initiatives in Health Literacy and their Impact

i) Background

43. A number of strategic policy documents emanating from the USA and Canada, have focused on improving health literacy both by setting targets and objectives for improvements in health literacy and also by pursuing policy, programme, and practice initiatives which seek to improve health literacy, especially amongst those with low health literacy. In addition four recent reviews (1, 33, 37, 39) have been undertaken to examine what initiatives in health literacy have been tried, and what the impact of these have been.

ii) Policy Reports and Policy Objectives

44. For example, in their report Healthy People 2010: Understanding and Improving Health, the U.S. Department of Health and Human Services included improved consumer health literacy as a (developmental) objective (32). Other US examples include the American Medical Association which has adopted a policy on health literacy, and the National Institutes of Health and Agency for Healthcare Research and Quality which introduced a grants programme entitled 'Understanding and Promoting Health Literacy' in 2004.

45. Still in the US, the Institute of Medicine's 2004 report (13), contains recommendations set out under three main headings: make effective communications an organisational priority to protect patient safety (actions such as raising awareness, training staff, using interpreters, creating patient centred environments, measuring and monitoring patient safety); address patients' communication needs across the continuum of care (actions such as signing at entry points, appropriate language, approaches to discharge, and recommendations about the health care encounter itself such as not giving too much information and encouraging questioning); and pursue policy changes that promote improved practitioner-patient communications (actions such as expand the range of patient centred educational materials, and policies on insurance and financial incentives).

46. Another example comes from the Canadian Public Health Association ( CPHA) which has identified the achievement of health literacy as one of its nine major goals.

47. According to Coulter and Ellins (1) ' Within the UK, the 'Skilled for Health' campaign was jointly launched in 2003 by the Department of Health and the Department for Education and Skills. The campaign aims to demonstrate the links between better basic skills and improved health and to develop health-related learning materials for use with key groups: teenage parents, people with long term medical conditions, the elderly and ethnic minorities. Six local projects were launched in 2004 for phase two of the initiative.'

iii) Reviews of Evidence of Health Literacy Interventions and Their Impact

a. Coulter and Ellins

48. In their book chapter on improving health literacy published in 2006, referred to earlier, Coulter and Ellins (1) conclude 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.'

49. Given the saliency of the Coulter and Ellins review to this report, it is worth recapping the main findings in some detail. The authors identified three key objectives of health literacy interventions that had been introduced. These were: to provide patients with timely and appropriate health information materials to enhance health knowledge, skills and behaviours, and to enable informed health decisions; to encourage the appropriate and effective use of healthcare services, including greater uptake of preventive and screening services; and to tackle inequalities in health and healthcare access by targeting information and education at low literacy, hard-to-reach and disadvantaged groups.

50. Given this range of types of objectives, Coulter and Ellins grouped the range of outcomes that had been specified for the interventions that had been tested into four categories: patients' knowledge and information recall; patients' experience, including communication and psychological outcomes; health services utilisation and cost; and health behaviour and health status.

51. Coulter and Ellins classified the interventions which they uncovered in their review into four types: written health information, alternative format resources (including internet and digitally based patient information and support systems); targeted mass media campaigns; and low literacy initiatives. The top level findings in each of these areas are reproduced below.

52. As far as written information is concerned, Coulter and Ellins conclude 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'.

53. As for alternative format resources, the review states that ' alternative format resources, such as websites, can also improve knowledge and studies have demonstrated high user satisfaction and beneficial effects on self efficacy and health behaviour. There is some evidence of greater health benefit for disadvantaged groups when access barriers are overcome. Harm arising from unreliable websites may be under-reported.'

54. As far as targeted mass media campaigns are concerned, they say that ' targeted mass media campaigns have been shown to increase awareness, but the effects may be short-lived. There is some evidence of impact on utilisation of services, but little evidence of beneficial effect on health behaviour, although two studies showed that the mass media could be effective in influencing smoking behaviour among young people'.

55. In relation to low literacy initiatives they comment that ' low literacy initiatives may employ any of the strategies described in the three other categories. Where low literacy initiatives differ is in specifically targeting such strategies towards groups who lack adequate health literacy skills. 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 problem.' [Note though that elsewhere they comment that improving readability does not of itself improve necessarily improve comprehension.]

56. Most of the evidence for low literacy initiatives currently comes from North America. Overall they conclude - as set out above - 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.'

b. Report of the Expert Panel on Health Literacy

57. The report of an expert panel on the topic of health literacy in Canada (33) which was published in 2008 concluded that ' there are very few rigorous evaluations of the effectiveness of health literacy interventions in Canada or in other countries' and also that ' there is some evidence that community-based and participatory approaches hold some promise in addressing health literacy issues'. Whilst the expert group considered that there were potentially valuable initiatives throughout Canada to address health literacy issues, many of these were short-term and without sustained funding, and there are no ongoing mechanisms for sharing best practices across the country.

c. Pignone et al

58. The 2005 systematic review by Pignone et al (39) examined interventions designed to improve health outcomes for persons with low literacy skills. Twenty articles examining interventions designed to improve health among people with low literacy were found. The most common outcome studied was health knowledge; fewer studies examined health behaviours, intermediate markers, or measures of disease prevalence or severity. According to the authors, the effectiveness of interventions appeared mixed and the review concludes that drawing conclusions about effectiveness is difficult and that further research is required.

d. De Walt et al

59. The review by DeWalt et al (37) in 2004 reviewed 3015 titles and abstracts from the period 1980-2003, and found 29 literacy (NOT health literacy) interventions. They concluded that ' These studies did not provide a good evidence base: no studies looked at the impact of literacy interventions on health care costs, reducing health inequalities or reducing health care access disparities; most studies of health outcomes focused on improvements to knowledge and the interventions did demonstrate increased knowledge, at least in the short term.'

iv) Other Contributions

60. The 2008 article by Nutbeam (8) emphasises the importance of more general strategies to promote literacy, numeracy and language skills in populations.

The Nature and Extent of Links between Health Literacy and Scottish Government Policy

61. It is clear from the foregoing that health literacy - and the improvement of health literacy - is crucial to the delivery of Scottish Government policy. An increase in health literacy is necessary for , and congruent with, the aspiration expressed in 'Better Health, Better Care' (40) for 'mutuality' - that is a greater sense of ownership and involvement of the public in service design. However, in general up until now, public debate and policy in the UK has been more strongly focused on the provision of health information than on health literacy. (Indeed, the drive to deliver high quality consumer information is a central component of Government policy for the NHS (41). Initiatives such as NHS24 and the National Electronic Library Health illustrate how significant a policy driver this has been.)

62. At a more detailed level, the key policy areas which link to an improvement in health literacy relate to reducing health inequalities (including a focus on wider determinants), to improved public health, to patient and public engagement, to patient safety, to service redesign, to self care and to the self management of long term conditions, to the encouragement of personal responsibility, and to policy on adult literacy and numeracy more generally 26.

63. Some of these policy drivers can be described as 'enduring' whilst others have been given particular emphasis by the current administration. As regards 'enduring' policy drivers, policy highlighting the focus on patient and public engagement in the development and delivery of healthcare was first developed in the late 1990s (42, 43). Government policy ever since (both in the UK and in Scotland) has continued to reinforce this as an underlying value in the development and delivery of all healthcare services and as a way to ensure that the research agenda is relevant to the needs of patients. As argued by Coulter and Ellins (1) ' Health literacy is fundamental to patient engagement. If individuals do not have the capacity to obtain, process and understand basic health information, they will not be able to look after themselves effectively or make appropriate health decisions.'

64. A paramount focus on patient safety has been at the heart of government health policy for decades, and has been highlighted in a range of policy documents (31, 40, 41, 42, 43). The same is true for s ervice redesign, which recognises that service delivery is not a static function (31, 40, 41, 42, 43).

65. Self care is ' what people do to care for themselves, their children, other family members and their communities. In relation to health and health care, it is all that people do to maintain health, prevent illness, seek treatment, manage symptoms, treatments and side effects, accomplish recovery and rehabilitation and manage the impact of chronic illness and disability' (44). Supporting self care is a major part of Scottish Government programmes to improve health and to make best use of health care resources (31).

66. The current administration has focused very clearly on the reduction of health inequalities (45) and on the improvement to public health through policy initiatives and programmes to reduce obesity, smoking, alcohol and drug consumption, to improve sexual health, and to improve mental health and wellbeing. A strong focus on Early Years Interventions has characterised much of government policy (40, 46). These policy objectives are completely congruent with a requirement to invest in improving health literacy.

67. In their 2006 review of interventions to improve health literacy (1), Coulter and Ellins say 'Achieving greater health literacy in the population is, therefore, integral to improving the health of disadvantaged populations and to tackling health inequalities'. In their 2007 article, (47), they go one step further and argue that ' any strategy to reduce health inequalities must promote health literacy'. They say that ' because health literacy is central to enhancing involvement of patients in their care, all strategies to strengthen patient engagement should aim to improve health literacy.'

68. They continue ' Many people will have difficulty taking advantage of these (sic) new opportunities if the problem of health literacy is not dealt with. This could widen health inequalities, or even create new ones.'

69. According to Coulter and Ellins (47), health information materials, decision aids, self management action plans, and other "technologies" of patient engagement are most effective when they supplement or augment, rather than replace, interactions between patients and professionals. They argue that as patients take on new health roles, ongoing support from health professionals may become even more important. In addition, they argue that health professionals must be given the opportunity to develop their competencies in patient centred care-particularly their communication skills; and that clinicians must also be given the resources needed to work collaboratively with their patients, to help them access and understand health information, and to offer support in making choices to those who need (that support).

Possible Options for Development

70. The above summary and the scan of the relevant literature suggest there will be no 'magic bullet' as regards a solution to the problems created by low health literacy. The research evidence provides a few 'leads' but no decisive template for action. As identified in this literature scan, policy responses could cover any / all of the following: improvements to written materials; service redesign; building on the adult literacy and numeracy strategy (52); developments to / support for health professionals to develop their competencies; brokering and / or mediation.

71. There is substantial evidence (over 800 studies according to the Institute of Medicine) that most health materials are poorly written and poorly designed. Although this is only a small part of the overall approach to health literacy, initiatives to make improvements to written materials are important, and there is a large literature on how this can be achieved, and a number of checklists / tools which are available to assess readability, cultural appropriateness etc (1, 48). Literacies projects in Scotland have also produced guidelines on clear communication. 27

72. Some individual studies have highlighted initiatives around practice redesign to help improve outcomes with for individuals with low literacy ( e.g. Institute of Medicine Roundtable on Health Literacy held on 19 November 2008. The full report of this meeting is not yet available). Specific ideas are about walking through the health care experience from the perspective of a patient and making improvements to signage, etc.

73. According to Nutbeam (8) any strategies to promote (general) literacy, numeracy and language skills in populations, will have a positive impact on health literacy. Given that improvement to general literacy and numeracy is set out as an objective within the Government's performance management framework (31) , the policy response within the Education Directorates should be linked to the overall policy response on health literacy.

74. Coulter and Ellin's recent article (47) found that '... developing professionals' communication skills was also an effective way to improve patient participation in clinical decision making and their knowledge and information recall of their condition and treatment. Clinicians needed to learn to communicate risk and elicit and respect patient preferences, and to coach and use question prompts. The involvement of health professionals in educational and self help programmes appeared more effective for disadvantaged populations.' Elsewhere (1) they have made the case that support for health professionals, particularly in developing their competencies - particularly their communication skills - may be helpful in addressing low health literacy.

75. As described by Papen and Walters (18) and set out in Paragraph 23 above, there may be a role to be developed which can be described as 'brokering' or 'mediation' to support those with low health literacy. (Note that the 'brokers' or 'mediators' may be either formally or informally connected to the person who is receiving support.)

76. Many other possibly promising interventions are suggested by Coulter and Ellins (1), which may be promising for those with low health literacy. For example internet based educational programmes; information and advice services supplied through digital interactive television; the use of visual aids and particularly pictograms; and 'information therapy' where it is argued that information should be prescribed to patients at every point along the healthcare continuum (49).