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BMJ. Sep 18, 1999; 319(7212): 764–766.
PMCID: PMC1116601

Helping patients access high quality health information

Sasha Shepperd, lecturer,a Deborah Charnock, research officer,b and Bob Gann, directorc

The provision of consumer health information was pioneered in the United States: organisations such as Planetree(a not for profit, community based healthcare initiative) were among the first to provide information services.1 Over the years several organisations in the United Kingdom—including the College of Health, the Help for Health Trust, the Health Education Authority, the Health Education Board for Scotland, and self help groups—have provided information on a wide range of health topics directly to patients or consumers. Similar initiatives have been undertaken in Europe, Canada, Australia, and New Zealand.2 More recently, developments in Britain such as local consumer health information services, the Patient Partnership Strategy,3 and initiatives at the King’s Fund4,5 have improved awareness of and access to evidence based consumer health information. These developments have come at a time when the amount of health information is increasing, particularly through the internet—and amid increasing concern about the varying quality of health information accessed by patients. We outline some steps to help health professionals advise patients on where to find good quality health information in this rapidly changing field.

Summary points

  • Patients require access to good quality, evidence based information so they can take an active part in decisions about their health care
  • The amount of information available to patients is increasing, particularly through the internet
  • The quality of this information remains variable
  • Health professionals need to be able to direct patients to sources of good quality consumer health information, including health related websites

Sources of consumer health information

Some of the organisations in the United Kingdom that are funded to provide health information for patients and the public are listed in box boxB1B1.

: Sources of consumer health information

The internet

The internet offers access to health information provided by many different organisations and agencies. Several providers offer gateway services that operate a selective process, only including information that meets certain criteria. First time users may find that gateway sites are a helpful initiation to this type of information. Box BoxB2B2 gives examples of widely used gateway sites that use explicit guidelines for selecting information. A fuller listing can be found in a review by Kim et al.7 Box BoxB3B3 gives examples of other well known websites that provide public access to health information. As these sites contain links to other organisations and services, including the sites of national self help groups, we have not listed addresses for individual services. These examples are limited by the dynamic nature of the web. Also, even where information is selected to conform with explicit criteria, the basis for these criteria is not always clear.

: Gateway sites
: Online sources of consumer health information

Appraisal tools for consumer health information

Assessment tools are available to judge the content of consumer health information, and many organisations have developed internal systems of appraisal. Several problems must be resolved before appraisal becomes common practice, including the resources required to assess the vast amount of health information written for consumers.

Quality

Judging the quality of consumer information is not always straightforward. Guidelines and checklists have been published for appraising the quality of written consumer health information.810 Commonly agreed criteria include currency and sources of information, reliability, relevance, and accuracy. For most of these instruments, however, details of reliability or validity are inadequate, and some seem to have been derived from a variety of unstated perspectives.11Instructions on use and interpretation are not always explicitly stated.

Retrieving high quality online information that may be of use can also be a problem. Difficulties in searching and using information in this rapidly changing environment have been well described.7,12The advent of the internet has led to a proliferation of appraisal tools and quality checklists, particularly in relation to the development of gateway sites.7 The reliability and validity of these checklists are not always clear.Box clear.BoxB4B4 shows two validated tools developed for rating the quality of consumer health information.

: Examples of tools for assessing the quality of consumer health information

Readability

Readability tests are designed to provide a quantifiable assessment of how easy text is to read. A criticism of readability tests is that they do not take into account a patient’s prior experience and motivation. During the course of an illness patients may rapidly become familiar with quite complex terminology.16 Gender, culture, and age should also be considered when these measures are used.17 Tests of readability are generally based on the number and length of sentences and the number of long words (usually defined as words with three or more syllables). Commonly used measures of readability include Flesch (which may be found on many word processing packages)18 and Gobbledygook.19 In addition to quality and readability, the evidence base of the information and the involvement of consumers in the production of the material base should be considered.

If no information is available

If good quality health information is not available an alternative is to produce a leaflet or website. Outlining the steps to good practice for those setting out to write leaflets for patients, Smith emphasised the time it takes to produce clear, unambiguous material that patients will use.20 In addition to following validated quality criteria, writers should take patients’ information needs into account and be aware of how people will read what they have written.21,22 This will require involving patients in developing and testing materials.10 Before embarking on this lengthy process, however, a first step is to check if high quality information already exists.

Acknowledgments

We thank Dr Muir Gray, Dr Tony Hope and Dr Theo Schofield for their helpful comments.

Footnotes

Competing interests: SS receives royalties from the DISCERN handbook.

References

1. Planetree. www.planetree.org; accessed 2 August 1999.
2. Rees A, editor. Managing consumer health information. Phoenix: Oryx Press; 1991. Medical consumerism: library roles and initiatives.
3. NHS Executive. Patient partnership: building a collaborative strategy. Leeds: NHS Executive; 1996.
4. Dunning M, Abi-Aad G, Gilbert D, Hutton H, Brown C. Turning evidence into everyday practice. London: King’s Fund; 1999.
5. Coulter A, Entwistle VA, Gilbert D. Informing patients: an assessment of the quality of patient information materials. London: King’s Fund; 1998.
6. NHS Executive. Information for health: an information strategy for the modern NHS 1998-2005. Leeds: NHS Executive; 1998.
7. Kim P, Eng TR, Deering MJ, Maxfield A. Published criteria for evaluating health related web sites: review. BMJ. 1999;318:647–649. [PMC free article] [PubMed]
8. Coulter A. Give patients solid information. Management in General Practice. 1996;20:40–42.
9. Entwistle VA, Sowden AJ, Watt IS. Evaluating interventions to promote patient involvement in decision-making: by what criteria should effectiveness be judged? J Health Serv Res Policy. 1998;3:100–107. [PubMed]
10. Coulter A. Evidence based patient information. BMJ. 1998;317:225–226. [PMC free article] [PubMed]
11. Entwistle VA, Sheldon TA, Sowden AJ, Watt IS. Supporting consumer involvement in decision making: what constitutes quality in consumer health information? Int J Health Care. 1996;8:425–437. [PubMed]
12. Jadad A, Gagliardi A. Rating health information on the internet. JAMA. 1998;279:611–614. [PubMed]
13. Charnock D. The DISCERN handbook: quality criteria for consumer health information. Abingdon: Radcliffe Medical Press; 1998.
14. Charnock D, Shepperd S, Gann B, Needham G. DISCERN—an instrument for judging the quality of consumer health information on treatment choices. J Epidemiol Community Health. 1999;53:105–111. [PMC free article] [PubMed]
15. Mitretek Systems Innovative Technology in the Public Interest. hitiweb.mitretek.org/hswg; accessed 2 August 1999.
16. Meade C, Smith CF. Readability formulas: cautions and criteria. Patient Educ Couns. 1991;17:153–158.
17. Secker J, Pollard R. Writing leaflets for patients: guidelines for producing written information. Edinburgh: Health Education Board for Scotland; 1995.
18. Flesch R. A new readability yardstick. J Appl Psychol. 1948;32:221–233. [PubMed]
19. Ewles L, Simnett I. Promoting health: a practical guide. London: Scutari Press; 1995.
20. Smith T. Information for patients. BMJ. 1992;305:1242. [PMC free article] [PubMed]
21. Sless D, Wiseman R. Writing about medicines for people. Canberra: Australian Government Publishing Service; 1997.
22. Wright P. Writing and information design of healthcare materials. In: Candlin C, Hyland K, editors. Writing: texts, processes and practices. London: Addison Wesley Longman; 1998.

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