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BMJ. 1998 Jul 25; 317(7153): 225–226.
PMCID: PMC1113581

Evidence based patient information

Is important, so there needs to be a national strategy to ensure it
Angela Coulter, Director of policy and development

Leaflets and other information packages (video and audio tapes, computer programs, and websites) have long been seen as integral to educational strategies designed to promote health, persuade people to adopt healthy lifestyles, and increase uptake of screening. They have also been developed to educate patients in self care of such chronic conditions as arthritis, hypertension, stress related psychological problems, gastrointestinal diseases, and back pain, and how to take medicines correctly. There is now growing interest in providing information to support patients’ participation in choosing treatments and deciding on strategies for managing their health problems.1 Much well intentioned effort goes into developing such material, but good intentions are not enough to guarantee quality and usefulness, as two papers in this week’s issue show (pp 263, 264).2,3 If patients are to be active participants in decisions about their care the information they are given must accord with available evidence and be presented in a form that is acceptable and useful. Information materials are no substitute for good verbal discussions, but consultations are usually short and plenty of evidence exists that patients do not receive the information they want and need.4 Leaflets and other materials can therefore play an important part in supplementing and reinforcing information provided by clinicians, but the information they contain must conform to the highest standards of scientific accuracy and must be tested for comprehensibility and relevance.

Unfortunately few of the patient information materials currently in use meet these standards.5 Far too many adopt the paternalistic view that patients cannot cope with bad news and must be kept ignorant of medical uncertainties. Patients are seen as ignorant children in need of instruction and reassurance, rather than as experts in their own needs and preferences. Benefits of interventions are emphasised, risks and side effects glossed over, and scientific controversies hardly ever mentioned. In too many cases the information contained in patient information leaflets is inaccurate or misleading.

Various checklists have been proposed to enhance the quality of health information.68 These cover issues such as accessibility, acceptability, readability, and comprehensibility; style and attractiveness of presentation; accuracy and reliability of content; coverage and comprehensiveness; currency and arrangements for review and updating; reference to sources and strength of evidence; reference to sources of further information; credibility of authors, publishers, and sponsors; relevance; and utility. In general far more attention has been paid to presentation and readability than to content. Ironically the insistence on aiming for the lowest possible reading age as measured by readability formulas may have contributed to the infantile quality of many materials. There are many problems with the standard readability formulas,9 and they are no substitute for researching patients’ information needs and involving them in developing and testing materials. But accuracy of the content is arguably even more important, and there is no excuse for palming patients off with unscientific clinical opinion which does not conform to the standards required for evidence based medicine.

The growth and wider availability of the internet will greatly increase access to health information. Already over 10 000 health related websites exist, and over a third of internet users access the web to retrieve health and medical information.10 Much of this material is inaccurate or misleading, but it is difficult for non-specialists to sort out the wheat from the chaff.11,12

Failure to pay attention to the quality of information obtained by patients could have serious consequences. An overoptimistic view of medical treatments could foster demand for inappropriate interventions, leading to iatrogenic harm, increased dissatisfaction, and unnecessary costs. On the other hand, accurate information which patients find useful has the potential to enhance the quality and appropriateness of health care. It is time to develop a national public health information strategy which recognises the advantages in raising standards and the risks of not doing so. This will require investment in the production of better materials, training for clinicians and other information providers in how to use them, and the development of an accreditation system to help users to judge the quality of health information.

Notes

Information in Practice pp 263, 264

References

1. Coulter A. Partnerships with patients: the pros and cons of shared clinical decision-making. J Health Serv Res Policy. 1997;2:112–121. [PubMed]
2. Slaytor EK, Ward JE. How risks of breast cancer and benefits of screening are communicated to Australian women: analysis of 58 pamphlets. BMJ. 1998;317:263–264. [PMC free article] [PubMed]
3. Smith H, Gooding S, Brown R, Frew A. Evaluation of readability and accuracy of information leaflets in general practice for patients with asthma. BMJ. 1998;317:264–265. [PMC free article] [PubMed]
4. Audit Commission. What seems to be the matter: communication between hospitals and patients. London: HMSO; 1993.
5. Coulter A, Entwistle V, Gilbert D. Informing patients: an assessment of the quality of patient information materials. London: King’s Fund (in press).
6. Entwistle VA, Watt IS, Davis H, Dickson R, Pickard D, Rosser J. Developing information materials to present the findings of technology assessments to consumers. Int J Technol Assess Health Care. 1996;8:425–437. [PubMed]
7. Silberg WM, Lundberg GD, Musacchio RA. Assessing, controlling and assuring the quality of medical information on the internet. JAMA. 1997;277:1244–1245. [PubMed]
8. Jadad AR, Gagliardi A. Rating health information on the internet: navigating to knowledge or to Babel? JAMA. 1998;279:611–614. [PubMed]
9. Meade CD, Smith CF. Readability formulas: cautions and criteria. Patient Education and Counseling. 1991;17:153–158.
10. Rippen HE. Criteria for assessing the quality of health information on the internet. In: Mitretek Systems website www.mitretek.org/. (Accessed 1997.)
11. Impicciatore P, Pandolfini C, Casella N, Bonati M. Reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home. BMJ. 1997;314:1875–1881. [PMC free article] [PubMed]
12. Wyatt JC. Measuring quality and impact of the world wide web. BMJ. 1997;314:1879–1881. [PMC free article] [PubMed]

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