VOL: 98, ISSUE: 03, PAGE NO: 40
Steve Kinrade, BA, RN, DipSexualHealth, is patient information coordinator, Royal Liverpool University Hospital
Like many health care professionals, nurses tend to rely on written patient information as a useful supplement to verbal advice. But it is vital that this information is valid, reliable, up to date and pitched at an appropriate level so that patients can understand it.
The importance of providing information to patients is highlighted in The NHS Plan (Department of Health, 2000). The plan’s aim is to make information readily available to patients, relatives and carers, enabling them to make choices and to give informed consent.
Decisions on treatment made by both patients and health care professionals should be based on information that is easy to understand and has been obtained from quality, evidence-based studies.
This is not radical new thinking. The Patient’s Charter (Department of Health, 1990) stated that patients have the right to a clear explanation of all proposed treatments, including any risks involved and the alternatives, before giving consent.
The Patient Partnership Strategy (Department of Health, 1996) envisaged that patients and carers would have a greater influence as active partners with health care professionals. In this way they would be better informed on their treatment and care, and would therefore be empowered to make informed choices.
An updated version of this document (Department of Health, 1999) provides examples of local and national initiatives in partnership development and highlights actions that need to be taken.
Why patient information is important
Research has indicated that when patients are given an opportunity to ask for information on their condition or proposed treatment, they are inclined to do so (Wallace, 1986; Meredith, 1993; Williams, 1993).
Written information allows patients to understand and learn at their own pace, and serves as a useful reference later on (Audit Commission, 1993). Another study found that when appropriate self-care information was given to patients there was a 7-17% reduction in the use of health care services (Morrison and Lift, 1990).
Continuing the theme of patients as consumers, relevant and comprehensible information can help to increase patient satisfaction with the care they receive. Rapid changes in the health care sector have prompted organisations to pay greater attention to patient satisfaction. Zabada et al (2001) suggest that one way of improving levels of satisfaction is to increase the provision of appropriate patient information.
The key word here is ‘appropriate’. Although information may be scientifically accurate, it is of little value if the patient does not understand it. It is important to consider patients’ literacy levels as well as how information is presented.
Literacy levels are currently a problem in the UK and patients with poor literacy levels may not be able to understand the information provided. A recent report suggests that as many as one in five adults has a lower literacy than would be expected of an 11-year-old child (Department for Education and Skills, 1999).
Accessibility of information
Another barrier to understanding is when patients find information difficult to access. Print size, readability and layout can affect the accessibility of information leaflets. Consideration should also be given to patients with special needs, such as those who are partially sighted.
A recent survey by the Royal National Institute for the Blind (2001) revealed that 86% of participants had received a letter in average-sized print, which many found too small to read.
Audit of information
Ideally, information leaflets should be both evidence-based and accessible to patients. With this in mind a snapshot audit was carried out to assess the provision of both internal and external patient information leaflets across the sites of the Royal Liverpool and Broadgreen University Hospitals NHS Trust. All information leaflets used on wards and in clinical areas were audited.
The audit aimed to:
- Identify the number of information leaflets whose content had been reviewed in the past two years;
- Ascertain whether leaflets were available in large print for partially sighted patients and in other forms, such as Braille or audiotapes;
- Ascertain whether leaflets were available in languages other than English.
Areas of serious concern were found. There was no discernible ownership of or review and evaluation system for leaflet information. Less than 1% of leaflets contained evidence that they had been reviewed in the past two years and some of those on display racks were more than five years old.
Less than 1% of leaflets were available in large print for partially sighted patients and few resources were available for blind patients. This fails to meet the requirements of section 21 of the Disability and Discrimination Act 1995, which gives disabled people new rights, including access to public facilities and services. As a service provider, the NHS is required to address the accessibility of patient information.
There was also little provision for people from minority ethnic groups and less than 1% of leaflets were available in a language other than English.
The audit revealed the following areas for concern:
- Various inappropriate styles of presentation were evident, such as layout of text and print size;
- There was no evidence of patient involvement in the production of leaflets;
- Technical and medical terminology was often used, making it difficult for patients to understand;
- There was no coherent trust identity for internally produced leaflets;
- Photocopying was of a poor quality;
- Some information showed a bias towards particular products;
- Some leaflets were inappropriately placed in clinical settings.
Clinical negligence issues
The audit also revealed a failure to provide unbiased and evidence-based information on procedures, tests and treatment options, a requirement set out by the Clinical Negligence Scheme for Trusts.
Established in 1994 and administered by the NHS Litigation Authority, the CNST aims to provide a framework for trusts to fund the cost of litigation against alleged clinical negligence. Incidents occurring on or after April 1 1995 are covered. Membership of the scheme is voluntary, and is available to all NHS trusts in England.
To comply with CNST requirements, patients must be made aware of the risks and benefits of any proposed treatment or procedure. Its risk management standards also state that appropriate information should be provided to patients on the risks and benefits of the proposed treatment or investigation, and the alternatives available, before a signature on a consent form is sought.
The rationale behind this is that patients are less likely to complain or take legal action if they understand what they are consenting to.
The audit raised serious concerns about whether all patients could access written or alternative information and understand it. If they could not, how could their consent be considered to be fully informed? There was also a risk of litigation under the Disability and Discrimination Act 1995.
There were a number of weaknesses in the written information provided so the information needs of sizeable groups of patients were not being met.
If NHS patients are to be given the opportunity to access more information on treatments, the service has to become more patient-centred. Trusts need to develop appropriate structures to improve the availability and quality of information for patients and their carers. This includes not only the provision of written information leaflets, but also helping patients to contact relevant voluntary groups for support and advice.
Trusts should also ensure that adequate facilities, for example, interpreters and culturally appropriate materials, are available for people from minority ethnic groups and that those with special needs have access to appropriate provision, such as audiotapes, large-print leaflets and advocacy services.
The way forward
Much can be done at ward and clinical level. A simple audit of written information leaflets is easy to carry out in a clinical setting and is the most direct way of discovering what information is valid and reliable.
Another solution to the problem is to incorporate the provision of information into clinical pathways of care. This promotes the aims of clinical governance and regulates patient information, enabling health care professionals to assess patients’ understanding and provide help if necessary.
The provision of patient information is one of the driving forces of current NHS philosophy. Nurses are often in the best position to provide and monitor such information. However, the emergence of the internet as a resource tool is already challenging the status of health care professionals as information providers.
This is disconcerting, as the internet gives people access to information that they may not understand. Also, there is no quality control over the internet so patients may access information that is wrong and could be harmful.
Trusts need to meet this challenge by providing quality, evidence-based basic information for patients. This would serve as a foundation, allowing patients to gain in-depth information if they want to. This could be accomplished by encouraging them to seek further information from relevant and reputable sources recommended in leaflets.
One of the main obstacles to ensuring that patients receive quality, accessible basic information is the difficulty involved in changing NHS culture. As the audit highlighted, many health care professionals fail to involve patients in the development of written information, leading to assumptions about what patients want to know. This may be the result of time constraints on staff, but such attitudes are clearly out of step with contemporary thinking on health care delivery. Patient involvement would make the information much more effective.
A national strategy for the provision of written information for patients is needed. It should include guidelines on how to develop information to ensure that all sections of the population are catered for.
Some trusts have appointed patient information managers to work with health care professionals to ensure that they provide a high standard of patient information. This, coupled with a national strategy, is the way forward.
It is imperative that all trusts make a commitment to providing patients with professional, ethical and non-discriminatory information. The audit described in this article revealed that information leaflets are of questionable benefit if they are not linked to quality assurance mechanisms.
Patients can easily gain access to outdated or conflicting information, or information that they cannot read or understand. Health care providers have a duty to ensure that they are provided with reliable, valid and accessible information.