Education and debate

Helping patients access high quality health information

Sasha Shepperd, lecturer ^a,  Deborah Charnock, research officer ^b,  Bob Gann, director ^c. 

^a Department of Primary Health Care and General Practice, Division of Primary Care and Population Health Sciences, Imperial College of Science Technology and Medicine, London W2 1PG, ^b Division of Public Health and Primary Health Care, University of Oxford, Institute of Health Sciences, Oxford OX3 7LF, ^c Centre for Health Information Quality, Winchester SO22 5DH

Correspondence to: Sasha Shepperd S.Shepperd{at}ic.ac.uk

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 Kingdomincluding the College of Health, the Help for Health Trust, the Health Education Authority, the Health Education Board for Scotland, and self help groupshave 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 Fund ^{4 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 internetand 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.

	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 1.

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 2 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 3 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.

	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.^8-10 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.¹¹ Instructions 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 12} The 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 4 shows two validated tools developed for rating 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

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(Accepted 11 August 1999)