6. FINDINGS - STAGE 2
6.1 The findings of Stage 2 are organised in sections as follows:
- Usage and Understanding Of and Attitudes Towards the Terminology of 'Health Literacy'
- Perceived Scale of Low Health Literacy
- Links (Overlaps) Between Health Literacy and Other Policy Topics / Areas
- Perceived Main Issues in Health Literacy
- Ongoing Relevant Initiatives
- What do Respondents See as the Next Steps for Health Literacy?
- Tensions and Challenges.
Usage and Understanding Of and Attitudes Towards the Terminology of 'Health Literacy'
6.2 All those interviewed related strongly to the ideas underpinning 'Health Literacy' which are mapped out in Annex 3, and they were pleased to see that these issues had found their way onto the 'radar' of Scottish Government. However, only a minority (about one third) of respondents actually used the language and vocabulary of 'Health Literacy'. A few more recognised the term, and had heard it being used by others, but did not use it themselves.
6.3 This is in itself a key finding, as it demonstrates that the terminology is not widely used; if the term 'health literacy' is not widely used by those interviewed for Stage 2 of this scoping exercise, then it is highly unlikely to be used by others whose remits link less clearly to the topics discussed here.
6.4 For those who did use the terminology, it was used in a variety of ways. A few individuals used it to mean something close to the 'functional health literacy' idea set out in Paragraph 6 of Annex 3.. The others used it to mean something broader - closer to the empowerment / citizenship / whole systems definitions as described in Paragraphs 10-17 of Annex 3. However, as anticipated, there was no clear or shared view of the exact meaning of the term 'health literacy' amongst those who used it.
6.5 For those who were not familiar with the terminology, or who were familiar with it but deliberately did not use it, there was a spectrum of reactions to the term 'health literacy' ranging from the fairly neutral to the distinctly against.
6.6 As far as the more negative views were concerned, one respondent said he was aware of the terminology but doesn't use it, mainly because ' people use it to mean all sorts of different things so it's not that useful'; another found it ' not that relevant to patients'; whilst one respondent who is himself very involved with work in the health literacy field said he found it ' a loaded term that dates back 30-40 years and comes from a very "old school" view of health'.
6.7 Many who were neutral about the term 'health literacy', talked about the ideas of health literacy by referring to other frameworks / paradigms which were of more direct relevance to their work. So for example, one respondent talked about the framework of 'information literacy', which she felt ' sits in the middle of health literacy, general literacy, and numeracy. Information literacy is broader than health literacy and gives an 'in' to other relevant organisations and institutions - e.g. schools'. Another respondent said the 'prism' through which he understood the issues was that of ' risk management, risk perception and risk communication'; others came at the ideas of health literacy through the frameworks of adult literacy and adult literacy in health (rather than health literacy), through equality and diversity and equality impact assessment, through patient centred care and patient centredness, through improving access to services, or through health care improvement more generally.
6.8 Thus, defining and disseminating a shared language of health literacy - if this is to be a goal - would require a substantial amount of effort. It is not - at this point in time - clear what the benefits of this would be.
6.9 Whether or not respondents used the terminology of health literacy themselves, the interviews used this terminology. Respondents were asked to think of this as a shorthand for the underlying ideas, and to answer by reference to their own conceptualisation.
Perceived Levels of Low Health Literacy
6.10 Respondents were generally of the view that low health literacy (or their equivalent concept) was widespread. Respondents also thought that awareness of health literacy problems was limited. Problems of low health literacy were discussed in relation to patients and carers, but also in relation to health care professionals, policy makers, and politicians. Few interviews touched directly on health literacy in its wider general population context; however on a number of occasions respondents made comments such as ' the medical model is limited' or ' focussing only on clinical consultations is too restrictive'.
6.11 Some respondents thought the problem of low health literacy was restricted to patients and carers, with the problems for professionals being their lack of awareness of health literacy as an issue; others thought that all population groups suffered to a greater or lesser degree from low health literacy.
6.12 There was agreement that measuring health literacy given the diffuse nature of the underlying concepts, was difficult. One respondent pointed specifically to the difficulties in distinguishing between poor health literacy and (non evidence based) health beliefs; for example in a clinical or public health setting it could be particularly difficult to identify through screening educated and articulate individuals who requested treatment without a good evidence base (or indeed treatment which might actually be harmful) as having low health literacy.
6.13 Few respondents would direct limited resources into an exercise to measure the extent of the problem. The questions from the Better Together patient surveys were not thought to provide robust measures of these complex concepts.
6.14 Two ongoing exercises were identified which will provide relevant quantitative evidence. First, a new government funded baseline study of adult numeracy and literacy in Scotland is currently being undertaken by Glasgow University. This will provide updated information on the levels of 'functional health literacy' as discussed in Paragraph 6 of Annex 3.
6.15 Second, a team at Maastricht University is currently developing a questionnaire for use in an international study of Health Literacy which will run from 2009-2011. The approach to measuring health literacy will be developed during April-August 2009, ahead of the data collection in Autumn 2009. It is anticipated that the results of this study will be available in Autumn 2012. The countries participating in this exercise are the Netherlands, Austria, Bulgaria, Poland, Spain, Germany, Greece and Ireland. More countries may join over the summer. It will be important to follow this work as it develops 4.
Links (Overlaps) Between Health Literacy and Other Policy Topics / Areas
6.16 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.
6.17 Respondents identified policy in the following areas - which all have recent Scottish Government policies associated with them - as being particularly strongly linked to / dependent on improvements in health literacy:
- Health Inequalities;
- Patients Rights;
- Patient Safety;
- Self Directed Support / Self Management Strategies / Self Care (including shared decision making, care plans, and the self management of long term conditions);
- Anticipatory Care (including Keep Well - formerly Prevention 2010);
- Shifting the Balance of Care (including accessing health services in primary care);
- Mental Health and Wellbeing;
- Adult Literacy and Numeracy, and English as a Second Language;
- Workforce Policy.
6.18 So, for example, the Patients Right Bill will come into force in 2010. Underpinning this Bill is the idea that if people understand their rights and responsibilities better, then they will be better able to be involved in determining their own care. It is clear that improvements in health literacy will lead to greater understanding by patients of their rights and responsibilities and thus improved health literacy is important to this agenda.
6.19 To take a second example, 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' 5. Supporting self care is a major part of Scottish Government programmes to improve health and to make best use of health care resources. Self care requires a high degree of health literacy in order that patients can participate in shared decision making with health care professionals, evaluate alternative treatment options, and follow through on a self management plans. Linked to this is the idea of 'self management', which is described as 'a person-centred approach in which the individual is empowered and has ownership of their life and conditions' 6; people with long term conditions self care but also have to manage their condition(s).
6.20 The third example is taken from eHealth. The eHealth Strategy (2009-2011) specifically mentions health literacy 7. The eHealth Strategy states that ' eHealth will contribute to 'health literacy' to ensure that all citizens have the necessary skills, knowledge and confidence to manage their own health.' Thus the eHealth Strategy adopts a fairly broad definition of health literacy and links it to ideas of empowerment.
6.21 The fourth and final example relates to the educational work going on across Scotland in general Adult Literacy and Numeracy. The Scottish Government funds a national team of staff in Learning Connections, who support local partnerships to engage adults in literacies learning. This work enables individuals to become more confident and critical partners in their own healthcare and there is evidence that this often leads to a change in health behaviour (50, 51, 52).
6.22 In addition to these substantive policy areas, respondents talked about the links between health literacy and the six dimensions of quality / improved care identified in Better Health Better Care 8 : patient centred, safe, effective, efficient, equitable and timely. Respondents thought that improving health literacy would help to improve each of these dimensions of health care.
Perceived Main Issues in Health Literacy
6.23 When asked what the main issues / problems relating to health literacy were, respondents talked about:
- the lack of awareness within the NHS about the extent of low or inadequate health literacy (and general literacy) and the specific lack of awareness of NHS staff about where to go to get support when faced with an individual with low or inadequate health literacy;
- the lack of continuity and stability of funding of those initiatives which aim to address problems of low literacy / low health literacy;
- the time taken to establish projects to address issues relating to low literacy / low health literacy, the resource intensive nature of the interventions, and the lack of sensitive indicators of success;
- the poor or inadequate communication skills of many health care professionals;
- the poor quality of many written materials used within the NHS.
6.24 A point made over and over again in interviews was that ' the NHS is not sufficiently sensitive to the low levels of health literacy (and literacy more generally)' which those using NHS services have. Respondents thought that health care professionals were simply not aware of the difficulties faced by many service users. This lack of sensitivity and awareness meant that ' patients are not properly helped to identify, access, use, and benefit from services'. 9
6.25 Those who worked on projects which had a specific focus on improving literacy and health literacy faced ' difficulties associated with the stability and continuity of funding'. Even where services had been evaluated positively, there was no long term commitment to continuing services. Respondents were frustrated that good projects could not be sustained and the work which had gone into setting up projects was lost.
6.26 Respondents were enthusiastic about projects which had been developed to improve literacy and health literacy skills, and felt privileged to be involved in work which ' made such a difference to individual lives'. However, respondents stressed that this work had ' long lead in times', and could not be established quickly. It depended on partnership working which took time to 'bed down' and required trust and relationships to be built between a variety of agencies and organisations. The work was also ' very labour intensive'. The focus on quantitative targets (for example for the uptake of courses, or for the number of new learners) was described as rather a ' blunt instrument' for measuring the impact of these services.
6.27 The core issue for many respondents was the ' poor communication skills of many NHS staff and health care professionals'. There was general agreement that the situation was improving, but there was still a large gap between the aspiration for a patient centred service and the day-to-day reality of NHS services 10.
6.28 Respondents thought that there was a ' large amount of poor quality written information circulating in the NHS'. There were some success stories; the user testing of some written materials - especially those relating to national programmes ( e.g. for screening programmes) - had resulted in substantial improvements. And some organisations with national remits had invested substantially in the quality of their written materials by developing and using protocols, templates, style guides and peer review. However, respondents all had 'horror stories', many based on their own personal experience, of poor written communications.
Ongoing Relevant Initiatives
6.29 Respondents reported a large number of ongoing projects and initiatives in Scotland which are relevant to improving health literacy. These are listed at Annex 4. This list is not supposed to be comprehensive, but illustrative of the key areas of ongoing work.
6.30 The categorisation of these initiatives into the various areas is not straightforward. There is no 'neat' categorisation that can be used, and each example could arguably feature under a number of different headings. Nevertheless, it is helpful to attempt a summary of the wide range of ongoing projects and initiatives.
6.31 The main categories which have been identified are:
- Training on Literacy / Numeracy / Health Literacy (including Keep Well - see Paragraph 40 in Annex 3);
- Improving Communications;
- Improving Written Materials (including understanding instructions for medication, consent form, appointment forms and so on);
- Improving Access to Services;
- Knowledge Management;
- Management of Multiple Morbidities / Management of Long Term Conditions.
(Note that these categories span both the narrower definitions of 'functional' literacy / health literacy and the broader - more public health type definitions as described in Annex 3.)
6.32 Many of these projects and initiatives have a direct and obvious relationship to the topic of health literacy, and they were spontaneously mentioned by interviewees. However, what is potentially more notable in the context of this piece of work is some of the initiatives which are not - in the investigators eyes - directly linked to health literacy, but which are on closer inspection highly relevant.
6.33 In these latter cases, the link to health literacy was illuminated through the interview process itself. This illustrates the diverse and complex nature of the topic under investigation, and the context described in Paragraphs 6.2-6.8 above whereby respondents relate to the underpinning ideas whilst not necessarily using the language or terminology of 'health literacy'. This suggests that there are likely to be many more ongoing relevant initiatives than the ones that are easily identified. Three examples listed in Paragraphs 6.33-6.36 below illustrate this; other examples could have been chosen.
6.34 The first example is a programme of research, funded by the Chief Scientist Office entitled 'Living Well with Multiple Morbidities'. Over the next 4 years, the research team will undertake a trial - with an assessment of cost effectiveness - of a complex intervention within a highly deprived area of Glasgow. The intervention will be used with individuals with multiple morbidities (3 or more existing long term conditions) who are frequent users of services but who do not get much out of their consultations (a fact identified in previous research).
6.35 The intervention is being developed to work at three levels: at the organisational level, at the level of the health care professional / patient interaction, and at the level of individual behaviour change. At the organisational level, patients will be offered longer consultations with GPs, Practice Nurses, or both; consultations will be structured over time, with continuity of care being a key element of delivery. At the health care professional / patient level, the intervention will focus around problem definition and goal setting. At the individual level, patients will be given materials and resources to assist with behaviour change. Patients will be randomised to intervention or treatment as usual (if that proves acceptable at the pilot stage), and a full evaluation of the intervention will be conducted.
6.36 The second example is the Ayrshire and Arran ehealth demonstrator site which will test out development of a website where people can see and update their personal health information in a secure and confidential way. It will provide support for people living with long term conditions to manage their personal health needs. An important aspect is that people with long term conditions and carers are participating in the design and development.
6.37 The third example is taken from the Gorbals Healthy Living Network, where the idea of a 'knowledge worker' has been piloted. In this instance, a community development worker who was already in post was trained in 'Information Literacy' 11 techniques. She was then able to identify other groups who could benefit from this training and this type of approach, and it was rolled out locally. By this means, 120 individuals were trained in this approach.
What do Respondents See As The Next Steps for Health Literacy?
6.38 There was support for continuing, building on, strengthening and developing the whole range of projects and initiatives currently underway or under development which interviewees identified as effective. The main areas which were identified were those which have already been discussed in this report: 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. As one respondent put it ' We need to build the capacity for the NHS to respond to people with literacy and health literacy difficulties'.
6.39 A few respondents made the point that health literacy was just one of ' a number of literacies' which were important to enable patients and the public to interact effectively with the NHS. Other literacies thought to be important which were mentioned were general literacy (and numeracy), phone literacy, computer literacy, digital literacy, and financial literacy.
6.40 A wide range of respondents also talked about the importance of wider adoption of the ideas of 'Ask Me Three Things' 12 and the 'Teach Me Back' 13 methods of communication. They would like to see widespread teaching and adoption of these techniques within the NHS.
6.41 There was some impatience and frustration that initiatives which had been developed, were taking a long time to implement. An example of this was the 'Happy to Translate' logo, linked to the review of provision of interpretation and translation which had not yet reached full scale implementation; it was also thought that there was insufficient general awareness of the 'Minimising Barriers' checklists.
6.42 Respondents were asked what new ideas or initiatives in health literacy they would like to see developed and / or implemented. The following suggestions were made 14:
- having a health care professional available in a local practices who could review with patients what they had been told during their consultations and who could spend more time with patients ensuring that they understood what they should do next;
- information therapy, and information prescribing;
- bibliotherapy - which is seen as wider than information therapy, and which involves drawing on wider sources (poems, stories etc) to help individuals to understand and develop their capacity to manage their own health effectively;
- further development of the 'knowledge worker' role by defining and developing the competences;
- the development of team teaching rather than interventions with individuals only;
- partnership working with literacies staff both locally and nationally;
- developing 'engaged libraries' as defined in the "Engaged Libraries" Chicago initiative;
- local libraries to support national ELibrary by providing local updated information;
- extending the ELibrary so that basic leaflets and posters can be developed;
- developing the role of community pharmacies;
- the development of more sites like Polishinfoplus;
- improving 'signposting' to services which can help sustain health.
(Note that these categories span both the narrower definitions of 'functional' literacy / health literacy and the broader - more public health type definitions as described in Annex 3.)
6.43 The above paragraphs summarise the responses to the questions about 'What Next?'. However, it is important to emphasise that there was no appetite for the development of a 'Health Literacy Strategy'. This was mainly because - as described earlier - the ideas underpinning health literacy are seen as being very diffuse.
6.44 For some respondents, this led them to ask the question ' What is the 'added value' of taking a health literacy approach? How - in practical terms - does it help to see these diffuse issues through the 'prism' of health literacy?'
6.45 More specifically, one respondent asked ' How is health literacy different - or anything more than - providing those things listed in the Partnerships for Access to Health ( PATH) project 'What do people with multiple and complex needs want from services?' [The list on Page 5 of the report covers: simple, quick access to services at the time they are needed; a single point of access or one service that will respond to all needs and thus avoiding repeated assessments; respect from staff; staff behaviour that is culturally sensitive, equal, fair, and non-judgemental; consistent and positive relationships with staff offering long-term support with handovers of casework when staffing changes ; effective joint working and communication between services; information about the services available, their remit and how to access them; a flexible approach to each client, as what works for one client may not work for another; support with the practicalities of everyday life; peer support; and involvement in decision making.] The respondent felt that this list covered all the aspects which should be thought about in the context of providing a service that was sensitive to the issue of health literacy.
6.46 However, other respondents were emphatic that there was an extra dimension which was not covered by the list in Paragraph 6.43 above; this related to the education and empowerment of individuals through building knowledge, skills and confidence, leading to changes in health behaviours (50, 51, 52).
6.47 It was suggested by a few respondents that without a strong conceptual framework to guide the activities and development of a health literacy perspective, to identify exactly what this 'added value' could be over and above the current range of existing or planned projects, and to identify gaps in the coverage of the current approaches, there was a risk of a lack of intellectual clarity. This was seen to be important given the multiple conceptualisations and vocabularies that already exist and which sometimes cause confusion and misunderstanding. (It is not clear where the development of this conceptual framework might come from; an attempt by the National Social Marketing Centre to set up a health literacy network had not been successful and no respondents expressed enthusiasm for the setting up of such a network.) Others, however, thought that the conceptual issues were secondary to focusing on the more practical aspects of increasing awareness of current activities, sharing knowledge and understanding, and focusing on learning from current practice.
6.48 There was a corresponding lack of clarity about whether there should be a single focal point for work on health literacy in the Health Directorates. Respondents are of the view that health literacy is delivered through joint working and that it relies on a partnership approach. However, it was said by more than one respondent that the responsibility for health literacy ' falls between Community Learning and Development in the Local Authority and the NHS' or 'it falls between the NHS and the Local Authorities'. Another respondent commented that ' overall responsibility for health literacy is unclear; is this a shared responsibility or does one organisation have the lead? And if so, which organisation is leading?'
6.49 Overall then, on the whole respondents favoured taking an integrated approach, and adopting the ideas of health literacy into mainstream policy, practice and planning. This type of approach was thought to represent the most effective and efficient way to progress this important agenda. It was suggested that this integration is already happening to some degree and should be further encouraged.
Tensions and Challenges
6.50 The main issue that respondents identified was the scale of the agenda. Developing a NHS which is sensitive to the widespread issues of low or inadequate health literacy and which is able to respond to each individual's needs was thought to be a huge task.
6.51 Respondents thought that the extent to which the NHS was able to deliver a service which both recognised and responded adequately to problems of low health literacy had improved; but there was a very long way to go on every aspect of this work.
6.52 Specific practical difficulties which were raised were : the inadequacy of short term project funding to deliver these aims; the lack of recognition of how very labour intensive the work is and how much it depends on working in a long term one-to-one relationship with individual patients and carers; the clash between the aspiration for the NHS to deal adequately with problems of low health literacy and the harsh realities of the practical constraints of the NHS; the lack of commitment to the literacies / health literacies / wider literacies agenda within senior levels of the NHS.
6.53 These practical issues echo the sentiments of one of the main writers in this area, Ilona Kickbush who has written recently that ' To be a health literate society need a health literate public, health care professionals, politicians and policy makers.....Several initiatives remain at grassroots level. Lessons learned are not transposed to other contexts or communities, nor do they feed into policies being developed. The gap between policy and practice needs to be bridged in both directions.'15
6.54 The launch of the National Health Information Support Service, heralded in Better Health Better Care as a service which will have ' a key role to play in supporting initiatives which build people's capacity to improve their health and wellbeing' is also highly relevant.
6.55 The National Health Information Support Service is underpinned by a detailed 'Information Literacy' framework and an 'Information Literacy' cycle, which uses many of the ideas and concepts which underpin health literacy. Thus, the information literacy cycle covers a number of steps : defining questions, sourcing information, checking credibility of sources, sharing information, applying information to decision making, and transforming knowledge into practice; this takes the concept far beyond the domain of information and into the realms of citizenship and empowerment. Respondents agreed that this work - and the underlying ideas - must be fully aligned with other initiatives within the literacy / health literacy area.