Draft Guide to the Production and Provision of Information about Health and Healthcare Interventions
Section 1 - What makes good quality health information?
Much has been written about the quality of health information materials and various checklists have been produced to help assess different types of materials. Some of the key features of good quality information are listed in the box and discussed below.
Good quality information materials:
Clearly state what they are about and whom they are for
Are relevant to the people for whom they are intended
Are accurate and consistent with up-to-date research evidence about the effects of healthcare interventions
Are accessible, comprehensible and acceptable to the people for whom they are intended
Support patient-focused healthcare
Are designed to achieve their particular aims
Help people to identify further sources of information and support
Help people to judge the quality of the information provided.
A clear statement of aims
People will be better able to judge whether information materials are likely to meet their needs if they include a clear statement of what they aim to achieve, what they do and do not cover, whom they are intended for, and (if necessary) to whom they do not apply.
Health information materials should meet the information needs of their audience. In the past, healthcare professionals and other information producers tended to assume that they knew best what information people needed and wanted. Unfortunately, much of what was developed failed to address issues that people thought important.
The types of information that should be included in a package will depend on its aims and intended audiences. Although there is some consensus about the basic types of information that people need in particular situations vary in terms of the importance they attach to particular topics and the level of detail they prefer.
Health information materials should be accurate. Accuracy, however, can be a difficult quality to pin down. Some of the most common failings of health information materials which have been judged 'inaccurate' have related to the provision of information. Materials have been criticised because:
they fail to provide sufficient information about the possible outcomes (benefits, potential risks and side effects) of healthcare interventions.
the information they do provide about the outcomes of healthcare interventions is not consistent with the best currently available research evidence.
they give the misleading impression that there is complete certainty about the effects (particularly the benefits) of healthcare interventions.
Other aspects of accuracy that are particularly important with these materials include the extent to which information about healthcare processes is consistent with 'best practice' (for example, as outlined in up-to-date, research-based clinical guidelines)
Omitting details sometimes leads to information being criticised as inaccurate and not comprehensive enough. However, a balance should be struck between providing enough information for people to understand the main points and providing so much detail that understanding is hampered.
The concepts of 'honest' and 'unbiased' information are also useful to consider here.
Accessibility, comprehensibility and acceptability
Information is useless if people cannot get hold of it when they need it or understand it when they have it. Factors that affect accessibility, comprehensibility and acceptability include the language and images used to convey information, the media and presentation format used, and the ways materials are distributed.
People vary in their communication needs and preferences. Materials that are accessible, comprehensible and acceptable to some people will not be to others.
It is likely that a range of information materials will be required to meet the needs of people:
from diverse cultural backgrounds
who have low literacy levels or low reading age
who communicate using different languages
who are hearing and/or visually impaired
who have other physical disabilities or limiting illnesses that impair their ability to access information in particular formats
who have learning difficulties
who have cognitive and/or emotional difficulties that affect their ability to process information
whose age, gender, cultural background, sexual orientation, social circumstances, disability or illness might affect their response to particular items and/or the way they are presented
who care for others who 'prefer' more or less detailed information about particular health issues.
Assessments of information and plans to develop or revise materials should consider the requirements of the Disability Discrimination Act (1995) 1 and the commitments made in the Scottish Executive Health Department's policy document, 'Fair for All' 2 and the Race Relations (Amendment) Act 2000.
The Disability Discrimination Act introduced measures designed to end the discrimination that many disabled people have faced, particularly in their ability to access services. The provision of information about and by health services falls within the terms of this Act.
'Fair for All' demonstrates the Scottish Executive Health Department's commitment to ensuring that NHSScotland is a culturally competent organisation. The NHS must be sensitive to the cultural, religious and language needs of ethnic minority groups as well as to issues of gender and sexuality. 'It has to be recognised that numbers are not, and must not be, the only determinants of priorities.'
Everyone is entitled to fair access to healthcare and that includes good quality health information by extending the principles set out in 'Fair for All' across the NHS. The development of a culturally competent NHS requires that information providers are sensitive to the various meanings that particular words, symbols and images may have and the responses they may evoke in different people.
Information for patient-focused health services
Information materials serve a variety of purposes. Good materials have the potential to help people to participate appropriately in their healthcare. Depending on their focus and aims they might, for example, help people to engage in informed discussions with healthcare professionals, to get involved in decisions about their care, and to take medicines in ways that are safe, effective and appropriate.
Information materials that are distributed via the NHS in Scotland should be consistent with the goals of a patient-focused health service. They should, for example, recognise and respect people's aspirations to be treated as individuals and to participate appropriately in their healthcare.
Fitness for purpose
Information materials should be well designed to meet their particular aims. For example, leaflets that aim to help people with a specific health condition choose between possible treatments should provide information to help them compare those treatments. Leaflets that aim to support informed consent should be consistent with current guidance and legislation on the subject.
It is unrealistic to expect one particular information package to cover all aspects of a health condition or healthcare intervention in a way that is appropriate for everyone affected by that condition or who might be offered that intervention. An information package that is not comprehensive in its coverage can still be very useful, especially if provided as part of a series covering the full range of relevant topics and issues.
Help to identify further information and support
It is reasonable to expect that information packages will address the questions most commonly asked in addition to things people may know to ask, and will help identify further sources of information and support.
Help to judge the quality of information
Though various factors affect the credibility of information, several basic features can help people judge whether the information is likely to be up-to-date and accurate. Information should indicate who was responsible for its production, explain what sources were used, and be clearly marked with production and revision dates.
1 Crown 1995
2 SEHD, 2001