Health information for patients: time to look beyond patient information leaflets

‘Not having the information you need when you need it leaves you wanting. Not knowing where to look for that information leaves you powerless. In a society where information is king, none of us can afford that.’ Lois Horowitz

The 2004 United Kingdom white paper ‘Better information, better choices, better health’ sets out an ambitious strategy for the provision of health information.¹ Everyone should have improved access to high quality information, health professionals should communicate more effectively with patients, and there should be a nationally coordinated process to produce and deliver information. There has been some progress towards these goals (e.g. NHS Direct now provides consumer health information by telephone, internet and digital television), but many patients and consumers still do not have access to the information they need or want, in a format they can understand.² A lack of appropriate health information can have serious or even fatal consequences.³ As the target date for implementing the strategy is 2008, we discuss health information provision and what can be done to improve health communication.

Why do we need health literate patients?

Despite substantial investment by the NHS in quality improvement programmes, national service frameworks and the new general practitioner contract, the management of many long-term diseases remains suboptimal. One factor that limits the promotion of clinical effectiveness is low health literacy among patients (Box 1). This is a major obstacle to providing high quality care, as long-term diseases require self-management skills and the ability to negotiate complex treatments and health services.

Box 1. Description of health literacy.

Health literacy is the ability to obtain, understand, act on and communicate health information. A health literate individual is able to obtain and use the information needed to make everyday health decisions. Health literacy is related to, but distinct from, basic literacy (reading, writing, numeracy).^4,39,40 Health literacy skills can be categorized as functional (able to read basic health information), critical (able to evaluate health information), and interactive (able to apply the information).⁴¹ All three levels are needed by an empowered patient, but functional health literacy is the foundational skill.

Low health literacy is very common. Most measures of health literacy have been developed in the USA, where approximately 40% of the population have inadequate health literacy.⁶ UK prevalence is unknown, but at least 20% of UK adults have literacy and numeracy skills insufficient to read simple written information; these people are at risk of having inadequate or marginal health literacy.⁴² Older adults, ethnic minorities, people with lower socioeconomic status, people with long-term illness or disability, and those with limited education or language proficiency are especially vulnerable to having low health literacy.^4,43

As well as difficulty reading health information, people with low health literacy may be less able to comprehend verbal instructions and are less able to communicate with health professionals. Low health literacy is associated with worse global health, lack of health knowledge, increased use of emergency and inpatient services, a low uptake of preventive services, higher medical costs, and reduced compliance with treatment.⁴⁴

A health literate individual has sufficient knowledge and skills to handle the information demands of the health system, communicate with health professionals, make appropriate use of health services, and contribute to optimizing the management of their own disorders.⁴ Patients with good health literacy skills can also act as advisers and mentors for other patients with long-term diseases and thus help spread best practice and improve disease management.

Access to information

Health literate patients require access to appropriate information to participate effectively in their health care. Health literacy is not only about access to information, but it is an important component. Engagement with health information is a prerequisite for shared decision-making and exercising choice, and limited consultation times force increasing reliance on information outside the clinical encounter.

In recent years, considerable progress has been made in increasing public access to high quality health information ( Box 2), particularly through public websites. The creation of such websites has transformed access to health information for patients who are able to use them. Patients are no longer confined to the information they receive in a patient information leaflet (‘PIL’) packaged with a medication, or leaflets picked up from their general practice or a hospital clinic. Access to information, however, is not sufficient by itself. Many people need help to find, understand and act on health information, especially written information. Even in developed countries, substantial proportions of the population have very limited literacy skills: approximately 7% of people in Sweden, 10% in the Netherlands and 20% in the UK and Ireland are classified as having the lowest level of adult literacy.⁵ Levels of health literacy are even lower. For example, around 40% of the US population has inadequate or marginal health literacy.⁶

Box 2. Consumer health websites.

Government sites

• NHS Direct: www.nhsdirect.nhs.uk

• A range of NHS sites for children and young people: www.nhs.uk/youngpeople/

• MedlinePlus (USA): www.medllineplus.gov

• DirectGov Health and Wellbeing: www.direct.gov.uk/en/HealthAndWellBeing/index.htm

• Health Canada: www.hc-sc.gc.ca/index_e.html

• HealthInsite (Australia): www.healthinsite.gov.au

• Health Finder (USA): http://www.healthfinder.gov

Medical publishers

• Patient UK: www.patient.co.uk

• BMJ Best Treatments: www.besttreatments.co.uk

• Net Doctor: www.netdoctor.co.uk

Charities

• Male Health – The Men's Health Forum: www.malehealth.co.uk

• Women's Health Concern: www.womens-health-concern.org/index.php

• Directory of Patient Experiences: www.dipex.org

Self-help groups

• Patient UK Self-help and Support Group Directory: http://www.patient.co.uk/selfhelp.asp

• UK Self-help Directory: http://www.ukselfhelp.info/

What can health professionals do?

The prevalence of low health literacy means that health professionals have an important role to play in checking patient comprehension and initiating open discussion about health information. Better information, better choices, better health recognizes this role. It says that patients should have access to information delivered in the way they want it, and that their information needs should be discussed during each contact with a health professional. They should also be supported to understand the information and be empowered to ask questions and make decisions. Taken at face value this seems to put an enormous burden on health professionals. Given that access to health information has a number of patient benefits, but does not usually have a direct effect on health,⁷ limited clinical time might be better spent on other matters. There are, however, simple steps that are reported to improve health communication,^1,3 and these could be delegated to other members of the health care team.

The teach back method

Patients of all literacy levels benefit from plain language explanations but those who do not understand may not admit this. A simple method for health professionals to increase the amount of information communicated to patients is the ‘teach back’ technique. Patients are given information and then asked to ‘teach’ it back to the doctor. Mistakes are corrected and comprehension checked again, until the patient has correctly understood the information. The technique is frequently recommended in American literature, but seems to be less well established in other countries. Observational evidence suggests that using this method does not increase the length of consultations,⁸ although the method does not seem to have been tested in a randomized controlled trial.

Signposting patients to reliable information

Information provision does not have to take place within a consultation. It is often more appropriate to guide the patient to a reliable source of information and then invite the patient for a follow-up consultation if necessary. The Picker Institute has shown that a lack of signposting by UK health professionals means that patients struggle to find the reliable information they need about health services.⁹ Information prescriptions are one way to signpost patients to high quality, evidence-based information ( Figure 1).^10–12 Pilot projects for the UK Department of Health Information Prescription scheme took place during 2007. As well as printed or alternative format resources, information prescriptions could include support or self-help groups, charities or an Expert Patient Programme. Improved communication between health services, social services and the third sector may be needed for this to happen. Further research is needed to assess the benefit of large-scale information prescription projects. The National Library of Medicine scheme has been evaluated, with clinicians and patients rating the scheme positively, but the research design was not randomized or controlled.¹³

Figure 1.

MedlinePlus information prescription Source: United State National Network of Libraries of Medicine

Use of alternative format resources

People now access news and information in a variety of formats, including by email, from websites, on interactive digital TV, in an SMS (Short Message Service) text to their mobile, and downloaded as a podcast. The rate of technological change and uptake of new technologies is rapid. For example, data from the UK Office of National Statistics show that 55% of households had internet access in 2006, compared to 10% in 1999 (Figure 2). In many European countries the use of these technologies is even higher (Figure 2). Yet when patients visit their doctor, information provision will almost invariably follow the pattern of a verbal explanation, occasionally accompanied by a printed patient information leaflet. Alternative formats are accessible and familiar to many patients but rarely used in mainstream practice. However, there are a number of randomized controlled trials that demonstrate the use of different formats to communicate health information to patients, including audio recordings, the internet, CD-Rom, video, and text message (Box 3).¹⁴ There is evidence that these formats are in many cases more effective than traditional health communication: written information can improve health knowledge and information recall, but alternative format resources can improve health knowledge, user satisfaction, self-efficacy and health behaviour.¹⁵

Figure 2.

Percentage of UK households with selected new technologies, 1998–2006 Source: Focus on the Digital Age,⁴³ National Statistics website: www.statistics.gov.uk

Box 3. Examples of different formats of health information effective at improving patient outcomes.

• Use of pictograms or pictures alongside written information,^45,46 medical instrument instructions,⁴⁷ and cancer screening information⁴⁸

• Information prescriptions in paediatrics¹⁰

• Personalized information for cancer patients⁴⁹

• Multimedia programs or games for children with asthma^50,51

• Audio recordings of consultations for general practice patients and parents of infants in intensive care,^52,53 and to provide information about prenatal diagnosis and asthma management.^54,55 Patient-focused podcasts have not yet been tested in randomized controlled trials, but are similar to other types of audio recording

• Use of SMS/text messaging in asthma and diabetes care^56,57 and smoking cessation^58,59

• DVD/video of information about breast, prostate and colon cancer,^60–62 informed consent information for intravenous contrast administration, knee arthroscopy and fracture surgery,^63–65 pre-test information about HIV testing,⁶⁶ pre-operative information about cataract surgery,⁶⁷ and decision support for newly diagnosed hypertensive patients⁶⁸

• Websites/the internet for migraine, smoking cessation and post-operative pain management.^69–72

What can health services and organizations do?

Assuring the quality of information

Figure 3.

Household internet access in selected European countries, 2006 Source: Eurostat 2007: http://www.ec.europa.eu/eurostat

Most interventions to address low health literacy focus on changing the content or format of information.¹⁶ In particular, there is a substantial body of research demonstrating that internet-based health information is frequently inaccurate or incomplete.¹⁷ Concern is often expressed about consumers finding inaccurate or even harmful information.^17–19 As a result, a number of quality assurance schemes have been developed, including those of the King's Fund, Health on the Net, and the International Patient Decision Aid Standards.^20–22 There is little evidence, however, that clinicians or patients take account of such schemes. This focus on quality probably reflects the concerns of clinicians more than it does the concerns of patients, and does not take into account more recent sociological research.²³ The structure of online information and consumer search patterns make the health information located online very similar to more traditional media sources.²⁴ The major internet search engines such as Google use complex algorithms to rank search results. This means that websites from major organizations tend to appear first when a search is carried out. For example, searching for ‘asthma’ on Google gives a page of search results from reputable and well-known charities and organizations such as Asthma UK and NHS Direct. These sites will all provide evidence-based advice, and the risks of coming across a site that provides inaccurate or dangerous advice are small. However, although online health information is readily accessible, little emphasis has been given to improving the ability of patients to make effective use of online health information for themselves.

Improving access to information in a range of formats

Quality and access could be further supported by the development of regional or national patient resource libraries, offering patient education materials in a variety of formats. Building on the experience of ‘books on prescription’²⁵ and online information prescription projects,¹⁰ resource banks allow information prescriptions to be provided in the format most accessible to the patient. Regional or national schemes could either be accessed directly by patients and health professionals, or as a resource to support the work of similar schemes that have already been successfully organized by patient participation groups in individual general practices.

This type of service would have financial implications for the health service, but there are also costs associated with not providing access to information. For example, Schillinger and colleagues have demonstrated that higher health literacy and physician use of interactive education are associated with better glycaemic control and lower rates of retinopathy in diabetes.^8,26 Poor health literacy is associated with higher medical costs and use of expensive emergency health services.⁴

Addressing the information divide

As the role of information and communication technology in the delivery of healthcare increases, we need to ensure that those without access to new technologies are not unduly disadvantaged.^27,28 These patients, who are more likely to be older, from ethnic minorities, non-English speaking or from lower socioeconomic groups²⁹ should be proactively sought by practices and their needs can be met with alternative approaches.^30,31 As a large program of research supported by the US government shows, the benefits of employing information technology may actually be largest for currently underserved populations.^32,33 Thus a main research priority should be development of new technology solutions that empower those most in need of empowerment. However, access to technology is not the only factor to consider. Mead et al. found that an expectation that online health information will be useful is a stronger predictor of interest in using online health information than demographic factors.³⁴ It is plausible that this attitude to internet information will become increasingly widespread as the internet and other technologies are integrated into society.

Alternative sources of health information can address the information needs of disadvantaged groups as well as extending access to information for all.³⁵ Providing a range of information formats allows information to be tailored to the needs of the consumer, but it should not be assumed that addressing poor health literacy will inevitably reduce health inequalities.³⁶ Particular attention needs to be paid to the information needs of consumers who do not use the internet or other new technologies, but the causal relationships between socio-economic status, health literacy and health status are far from clear.^37,38

Conclusions

Both individual health professionals and health services have significant opportunities to improve health communication. Health professionals can actively guide and support patients to access and engage with high quality sources of information, as well as developing strategies to improve their own communication. These strategies are widely recommended, but conclusions about their effectiveness are currently limited by a lack of rigorous evidence. It is clear that, in many circumstances, alternative format resources are an effective and viable alternative to the printed patient information leaflet. The other strategies appear promising, but have not yet been rigorously tested and evaluated.

Footnotes

DECLARATIONS —

Competing interests None declared

Funding The Department of Primary Care and Social Medicine at Imperial College is grateful for support from the NIHR Biomedical Research Centre Scheme. AC is supported by a studentship from Imperial College

Ethical approval Not applicable

Guarantor AC

Contributorship The idea for this paper arose in discussion between AC, JC and AM. AC drafted the manuscript, with comments and collaboration from AD, JC and AM