Jessica Greenwood, BSc (Hons), RN, Dip (Nurs).
Urology Clinical Nurse Specialist, The Princess Grace Hospital, London
Providing patients with information has been high on the political and nursing agendas for many years. Over a decade ago, the Government addressed the issue by stating that hospitals should ‘offer clear and sensitive explanations of what is happening on practical matters such as where to go and who to see, and on clinical matters, such as the nature of an illness and its proposed treatment’ (DoH, 1989).
The Patient’s Charter (DoH, 1992) and subsequently the NHS Executive (1997) further stressed the importance of providing patient information. These documents expressed a need for health-care professionals to actively involve patients in any decisions about their health, as well as encouraging them to participate in care.
The past few decades have seen a shift from the paternalistic model of providing health care, where doctors decide what information should or should not be given to the patient, to one that promotes patient autonomy and encourages partnerships with clinicians (Mills and Sullivan, 1999). Informed decision-making and consent are now vital components of today’s practice, but they are of little value if patients are not provided with the necessary information (Lowry, 1995).
The importance of good-quality information
The justification for, and content of, information resources has been well researched (Lowry, 1995; Coulter, 1998; Mills and Sullivan, 1999). Table 1 sets out some of the benefits of providing information and also the drawbacks of providing inadequate information or withholding information.
Methods of delivering information
The multitude of health information channels available today vary widely both in complexity of detail and mode of delivery (Box 1).
It could be argued that there is no substitute for a good verbal discussion (Coulter, 1998) as one-on-one, patient-to-clinician interactions facilitate instant clarification and feedback (Mills and Sullivan, 1999). However, this can be subject to time constraints in the ward and the clinic setting. This, combined with shorter inpatient stays, limits the health-care professional’s ability to provide comprehensive verbal information about all treatment options (Mumford, 1997).
The effectiveness of verbal consultations is also affected by patients’ ability to retain information, their ability to comprehend new and often startling information, their emotional state and a range of other internal and external factors (Robinson, 1992; Treacy and Mayer, 2000). Even after a face-to-face discussion, patients may require further input from nurses to supplement or x reinforce issues (Audit Commission, 1993). Verbal discussions alone therefore may not be enough.
One final consideration is that friends and family members are often not present at consultations, which can leave their information needs unmet (Feldman-Steward et al, 2001).
Audiovisual aids - These aids are advantageous in that patients, their friends and family, can access them at a time convenient to them, when they feel ready and at their own pace. They are excellent when used in conjunction with verbal information, as they enable visualisation and demonstration of key issues (Mills and Sullivan, 1999). However, they are often expensive to produce and can require specialist equipment, such as videoplayers and computers, which may limit their use or act as a deterrent for some patients.
Written information - This type of information provides a permanent record that can be repeatedly reviewed by patients, their friends and family. It frequently serves to reinforce verbal information in addition to prompting further questions (Dennison, 1997). Research has explored the use and importance of information booklets with positive results, noting that patients who are given written information are able to recall more details about their illness, treatment, drugs and so on (Sandler et al, 1989).
In terms of financial outlay, giving patients written information can range from nothing to very expensive, the latter potentially limiting availability only to those who can afford to pay. Leaflets can be costly to produce, illustrate and update, with the consequence that some older materials remain in use and contain information about practices that have been superseded or proven ineffective. For example older patient information resources will not have been able to acknowledge the huge progression that has been made in the treatment of conditions such as erectile dysfunction and benign prostatic hyperplasia, subjects about which patients need the latest information.
Written information also has the disadvantage of being subject to a patient’s reading level and visual capability, in addition to relying on their ability to understand a language that may not be their mother tongue. Only posters and small leaflets tend to be produced in different languages, as it is too expensive to produce multilingual versions of larger pamphlets and books.
Leaflets are usually available in health-care settings only, giving patients little time to read, understand and formulate questions before a consultation. Providing written information in waiting-rooms also presumes patients feel able to take them in view of other people. In an illness-specific clinic, such as an asthma clinic, where all those attending have the same problem this may not pose a problem, but many illnesses are of a sensitive nature, such as erectile dysfunction and incontinence, and clinics are not always disease-specific.
Arguably, the best method of providing information is verbally, with the use of supplementary written or audiovisual aids to support, clarify or illustrate issues. It is not acceptable to merely hand out discharge leaflets or advice sheets with no explanation. Leaflets are not all-encompassing and not all patients will seek additional advice.
The nurse’s role
Health promotion and health education are essential components of the nursing role. Nurses have a legal and ethical responsibility to ensure that information is delivered to patients in a format they can understand (Wong, 1992), and that relevant material is provided to specific patient groups.
While in some studies patients have cited nurses as the primary and most effective source of information (Cortis and Lacey, 1996), in others they have ranked nurses much lower (Mills and Sullivan, 1999). Only a local audit of the practices and information resources currently in local use can determine the effectiveness of a specific service and how to improve it.
Assessing the quality of information resources
It is crucial to undertake a thorough assessment of any patient information resource, written or audiovisual, before advocating its use. Good intentions do not guarantee high quality and usefulness (Slaytor and Ward, 1998; Smith et al, 1998). Resources should be provided only in accordance with the content, available evidence, presentation and relevance to practice in a particular setting or area. Box 2 provides an assessment checklist.
This does not necessarily mean that all hospitals and health-care facilities should produce patient leaflets tailored to their individual institution. A study that looked at leaflets published in England for women undergoing a hysterectomy showed that 80% of them did not follow any production guidelines and, as a result, bypassed guidance on literacy and comprehension, making them difficult for patients to read (Scriven and Tucker, 1997). One has, therefore, to question their usefulness in practice and, in an environment of limited funding and resources, their cost-effectiveness in terms of the time taken to write, illustrate and print such material.
Failure to meet patient information needs
Despite the prevalence of information resources, there are still questions as to whether what is provided is effective. A study by Luker et al (1996) highlighted that at follow-up a staggering 66% of patients felt that their information needs had not been met. One explanation could be that, despite patient education being one of the many roles undertaken by nurses, they - along with other health-care professionals - are not receiving adequate training to enable them to do this (Frith, 1991).
In addition, health-care providers often decide what information they think patients require and what they deem significant (Luker et al, 1996). If the information deficits remain, health-care providers have to question whether they are making the right assumptions.
One possible solution might be to empower patients by advising them on how to access and use information available on the world wide web.
The world wide web
The accessibility and use of the web is increasing. There is no definitive figure on the number of health-care websites in existence as more are developed and go live each day. Estimates range from 15 000 to 100 000 (Kelly, 2001).
Research shows that over one-third of users accessing the web are looking for medical or health information, 77% of them in an attempt to find answers to a specific question or with regard to a particular issue (Taylor and Leitman, 2001).
An IMPACT study (Datamonitor, 2002) found that 76% of respondents sought health information from their physician, 73% from written/audiovisual sources (books, magazines, television), 57% from the web and 53% from friends and family. Of the 43% who did not use the web, 36% had no access to it, leaving only 7% choosing not to use it. Reasons for this were concerns regarding the credibility of the information or a lack of awareness about what information could be found.
The world wide web has many advantages when it comes to disseminating information. As with other audiovisual aids it enables patients and their friends/family to access information at their own pace, at a convenient time, in the privacy of their own home. It is also instant, up to date and cost-effective - there are no printing costs, as users print off their own records, and it also saves hospitals the costs of producing and keeping their own materials up to date. Many websites also contain news sections explaining new ideas and technologies and, increasingly, databases of online journals and research, which patients and health-care professionals can draw on for further reading or to source more information.
The web facilitates self-help and support groups for patients with specific illnesses and concerns. Many provide a discussion or chat-room facility in which users can read and post their own questions or comments, usually in a controlled regulated manner, anonymously if desired.
The web may also help reduce the scope for error caused by assumptions about what information patients want and what to give them. By enabling them to seek information themselves in a database as vast as the world wide web health-care professionals are more likely to ensure that patient information needs are met. In addition, if patients are able to read and learn about their illness or problems before a consultation, they may then be better prepared, better able to ask more relevant questions and, as a result, gain the most from the short consultation time. However, it must be stressed that it is crucial for patients to get clarification from a health-care professional about the appropriateness of the information they have accessed in relation to their individual health status.
With such a wide range of websites, all varying in content and focus, it can be difficult to distinguish the good from the bad or, in fact, to know where to start. Similarly, with more sites posted, changed or updated daily, familiarisation with the web is an ongoing process.
As a professional, it may be advantageous to start by performing some searches yourself by looking up key phrases and terms, such as incontinence and prostate cancer, to see the range of options on offer. Review and assess the websites for accuracy, content and relevance to local practice, then compile a list of the most appropriate ones, which you can then recommend to patients.
Another useful consideration would be to group websites under subject headings, such as prostate cancer, bladder problems, government documents and so on, to prevent giving two or three different lists to a patient with more than one concern. These lists should be subject to regular review and updating, so including the publication date is important. This will explain whether new or updated websites have been considered and excluded. Tips on providing or supporting web-based patient information are listed in Box 3. Charity and government sites tend to be popular, as they are considered non-biased and non-profit-making. Sites produced by pharmaceutical and product companies, however, should not be ruled out. It is true that ‘e-health’ now forms an important part of company marketing strategies, but many such websites focus on meeting the information needs of users rather than simply promoting products (Datamonitor, 2002). Equally, many have excellent features such as medication diaries, patient-to-doctor communication advice, an ‘ask the doctor’ forum, and specific diagnostic and lifestyle advice from which many patients could benefit. The significance and role of company sites should therefore not be neglected.
There is a lot to consider when applying the information to be found on the world wide web to practice or when advising someone on the usefulness of the available information. Boxes 3 and 4 aim to offer tips on educating patients or answering their questions on how to get the most, and best, from the web and tips on what a good website should deliver.
It is evident the world wide web is here to stay, and one can predict that its use will increase with time and as the population ages. It is consequently not acceptable for nurses, or any health-care provider, to dismiss the implications for both patients and themselves. Nurses should take time to familiarise themselves with the structure and function of the world wide web and some of the available sites. The web is far from saturated and, as a result, more medical and health websites are sure to be developed.
In the USA, websites now offer personalised services so patients can, among other things, track their account/bills, change doctors and order more prescriptions. They can also post reviews for others to assess. The topics covered range from rating their doctors and nurses, to how long the waiting times were in the clinic as well as in getting an appointment, and discussing the courtesy of staff. It also allows employers to undertake data collection and employee ability and attitude surveys.
If you are not familiar with using a computer or accessing the world wide web, then there is no better time to start than now - before it does become too daunting.
Audit Commission. (1993) What Seems to be the Matter: Communication between hospitals and patients. London: The Stationery Office.
Cortis, J., Lacey, A. (1996)Measuring the quality and quantity of information giving to in-patients. Journal of Advanced Nursing 24: 674-681.
Coulter, A. (1998)Evidence-based patient information is important, so there needs to be a national strategy to ensure it. British Medical Journal 317: 225-226.
Datamonitor. (2002)ePharma: Targeting the health conscious. Available at: www.datamonitor.com (Accessed 2002).
Dennison, A. (1997)What do I want from my cancer doctor? In: Slevin, M., Short, R. (eds). Cancer and the Mind. London: Mark Allen Publishing.
Department of Health. (1989)Working for Patients. London: The Stationery Office.
Department of Health. (1991)The Patient’s Charter. London: The Stationery Office.
Feldman-Steward, D., Brundage, M., Mackillop, W. (2001)What questions do families of patients with early-stage prostate cancer want answered? Journal of Family Nursing 7: 2, 188-207.
Frith, B. (1991)Giving information to radiotherapy patients. Nursing Standard 5: 33-35.
Kelly, D. (2001)Doctor on the net: the Evening Times GP looks at the soaring popularity of medical websites. Glasgow Evening Times, June 21.
Lowry, M. (1995)Knowledge that reduces anxiety: creating patient information leaflets. Professional Nurse 10: 5, 318-320.
Luker, K., Beaver, K., Leinster, S., Glynn Owens, R. (1996)Informational needs and sources of information for women with breast cancer: a follow-up study. Journal of Advanced Nursing 23: 487-495.
Mills, M., Sullivan, K. (1999)The importance of information giving for patients newly diagnosed with cancer: a review of the literature. Journal of Clinical Nursing 8: 631-642.
Mumford, M. (1997)A descriptive study of the readability of patient information leaflets designed by nurses. Journal of Advanced Nursing 26: 985-991.
NHS Executive. (1997)Priorities and Planning Guidance for the NHS: 1998-99. London: NHS Executive.
Robinson, S. (1992)The learning needs of cancer patients. European Journal of Cancer Care 1: 3, 18-20.
Sandler, D., Mitchell, J., Fellows, A., Garner, S. (1989)Is an information booklet for patients leaving hospital helpful and useful? British Medical Journal 298: 870-874.
Scriven, A., Tucker, C. (1997)The quality and management of written information presented to women undergoing hysterectomy. Journal of Clinical Nursing 6: 107-113.
Slaytor, E., Ward, J. (1998)How risks of breast cancer and benefits of screening are communicated to Australian women: analysis of 58 pamphlets. British Medical Journal 317: 263-264.
Smith, H., Gooding, S., Brown, R., Frew, A. (1998)Evaluation of readability and accuracy of information leaflets in general practice for patients with asthma. British Medical Journal 317: 264-265.
Taylor, H., Leitman, R. (2001)International use drives self-diagnosis and treatment. research, Alert 14. Available at: www.harrisinteractive.com (Accessed 2002).
Treacy, J., Mayer, D. (2000)Perspectives on cancer patients’ education. Seminars in Oncology Nursing 16: 47-56.
Wong, M. (1992)Self-care instructions: do patients understand education materials? Focus on Critical Care 19: 1, 47-49.