There are many potential formats for patient information derived from guidelines and the format used should take account of the target audience. In addition to this, the choice of format will depend on the topic and budget available.
There is no one-size-fits-all approach to developing guideline-based patient information (DECIDE patients and public). But consider the information in the sections on using a layered approach, personalisation, accessibility, and colour, fonts and graphics.
The length of patient versions produced by different organisations varies, with them ranging from 2 to 3 pages to 40 or more pages. Patients and the public accessing information in guidelines don’t want to be overwhelmed by the amount of information (Cronin et al. 2018, DECIDE patients and public, Loudon et al. 2014, Utrankar et al. 2018). A German qualitative study on a plain language version of a breast cancer screening guideline found that people consider a brochure of 15 or more pages as ‘long’ and that it makes no difference for readers if this ‘long’ brochure has 15 or 150 pages (Frauenselbsthilfe nach Krebs [Womens Health Coalition] 2012). People like information presented in layers, which means that they can read as much or as little as they want. A useful approach is to have short paper versions and longer electronic versions, with the latter in particular using a layered approach (Ottawa Hospital Research Institute 2020). However, people with chronic conditions may appreciate longer booklets that can be read and reread time after time, thereby accompanying them through the whole process of care (Frauenselbsthilfe nach Krebs [Womens Health Coalition] 2012). Exactly how much information should be provided depends on the target group and may be discussed early in the development process.
The concept of layered presentation, that is, the most important information in the first layer, less important in the next layer, is one of the strongest findings on work with patients and the public (DECIDE patients and public). For paper documents, patients and the public could select the recommendations for inclusion in the document. In the German National Disease Management Guidelines Program, the most important information is presented in a short information 2-page leaflet. The leaflet then refers to a comprehensive brochure that provides in-depth information. An example is their patient-information.de portal webpage on coronary heart disease. If necessary, more than 1 leaflet on different topics can be derived from a sinlge guideline. For example, SIGN’s patient publications on the management of asthma present information from the guideline in various booklets, including a smaller booklet specifically on asthma in pregnancy. The flow of information in digital documents can be controlled by asking readers, who want more information on a topic, to click on text that has a link to another webpage or website.
Many patient versions attempt to personalise the information provided. Participants in UK focus groups and user testing found personalisation useful because it makes it easier to think how the information is relevant to them. The same has been found in other fields (DECIDE patients and public, Glenton et al. 2010). The degree of personalisation that is possible and appropriate will be context specific.
The simplest personalisation is to have a statement at the beginning of the patient version saying to whom the information applies (see the section who this information is for). Some patient versions use the words ‘you’ or ‘I’ in text or headings to refer directly to the reader. For example, a heading could be ‘What you need to know’, or ‘How much fibre do I need?’
Other ways to personalise information include personal stories, or narratives, of people with the same problem (Hartling et al. 2010). But, personal stories are not without problems, particularly regarding how to select stories for inclusion. For example, should the aim be to provide balance, to downplay problems, or to emphasise benefits? Selection of patient stories has proved difficult in decision-support work (Winterbottom et al. 2008). Evidence also suggests that personal stories may influence risk perception and lead to over or underestimation of treatment effects (Betsch et al. 2011, Betsch et al 2013, Winterbottom et al. 2008). So, if treatment or test options are presented in personal stories, it may be important to select the number of stories in proportion to their potential benefit. Furthermore, highly emotional narratives seem to have a greater impact on the perceived risk (Winterbottom et al. 2008).
In reality, it may be difficult to find the best story but readers do need to be able to connect with how information in patient versions affects them. Online websites focusing on patient views have been increasingly accessed and it might be helpful for guideline developers to signpost readers to popular websites, such as healthtalk.org or patientslikeme. These websites could provide personal stories for patient versions of guidelines.
Using quotations from people who have the condition may also be a useful way to personalise the information in patient versions and to engage readers (Loudon et al. 2014). Work with patients and the public highlights that patients find quotations useful, helping them to relate to the material (DECIDE patients and public). The use of quotations has the same challenge as using patient stories in terms of deciding which quotes to select. It may be difficult to find quotations that are consistent with the evidence base presented within the patient version. Figure 8 provides an example of quotations that SIGN used to personalise information in its guideline on managing diabetes.
Figure 8 Quotation to personalise information in SIGN’s guideline on managinging diabetes
If the audience is segmented into different groups, it may be beneficial to have multiple formats to maximise accessibility and findability. This includes the availability of hard copies as well as online versions of the material, such as access through mobile phone application, patient portal and access, and social media (Cronin et al. 2018, DECIDE patients and public, Utrankar et al. 2018). More and more patients, including older people, search for health information on the internet.
It has also been suggested that information for patients and the public linked to guidelines could be embedded within the guideline itself. This would allow healthcare professionals to more easily access it when having conversations with their patients (DECIDE patients and public).
According to Santesso et al. (2016), about half of existing patient versions are intended to be printed (although they are also available as pdfs) and half are intended to be read on-screen (although they can also be printed). Increasing accessibility of these may mean translating the patient version into other languages, as well as making versions available in large print, as audio or video. For example, SIGN produced information from a guideline on perinatal exposure to alcohol in the form of a booklet for parents andcarers and a YouTube video animation for young people on perinatal exposure to alcohol.
Guideline developers providing information in the form of web-based materials should ensure they are accessible for all. Careful consideration should be given to colour contrasts and making text clearer. Adding descriptions to images, which screen readers can then interpret, can give people access to all the information from guidelines. By adding descriptions to different command buttons, patients can more easily navigate the online information.
Patient information derived from guidelines should be easy to find. In Santesso et al.’s review (2016), the easiest patient versions to find were ones from a guideline organisation that also had a dedicated patient website. Of course not all guideline producers can have a whole website, although it is still possible to make it easy to find patient versions. For example, by having a dedicated section of the guideline producer’s website to list patient versions of guidelines. If the patient version is on another organisation’s website, it should be easy for people to find it when searching for help on their condition. For example, NHS Inform (Scotland’s single source of quality-assured health information) provides links to patient versions of guidelines on their website to help people to find them when searching for information on conditions. Evaluation of German patient versions has suggested that patients wanted healthcare professionals to forward the patient version to them (Schaefer et al. 2015).
If the patient version is designed for healthcare professionals to use in their conversations with patients, or to hand a printed copy to them, then it should also be simple for healthcare professionals to access. Therefore, it may be helpful to provide the patient version along with the guideline itself to ensure that healthcare professionals who look up the guideline will also find the patient version. Incentives for healthcare professionals to provide the patient version of the guideline may foster implementation. For example, a German survey found that most patients learned about patient versions of guidelines from their physicians (Schaefer et al. 2015).
Patients and the public have very low awareness of guidelines (Loudon et al 2014, Utramker et al. 2018), so it is likely that most people will not be looking specifically for guideline-related material when using, for example, internet search engines to find materials. Guideline producers may need to get professional help to assist them in getting ‘hits’ so that they reach their target audiences, and to ensure that the patient versions are indexed to their best advantage to allow search engines to find them. Patient organisations and other voluntary organisations should also be encouraged to promote patient versions of guidelines on their websites.
Patient information derived from guidelines should also be easy to read. Easy read is one form of accessible information. They use short, simple sentences and pictures to explain topics. For example, easy read documents provided by Mencap on keeping clean and handwashing help explain guidance during the Covid-19 outbreak.
The amount and level of technical terms that people are confronted with in patient versions of guidelines should be carefully considered (DECIDE patients and public) Health literacy varies and depends especially on socioeconomic status, education and ability to speak the language the patient version is written in, with lower levels of health literacy being associated with poorer health outcomes (Berry et al. 2010, Wolf et al. 2005). Plain language should be used, unless it is absolutely essential to use specialist language, so as to not exclude some of your audience. Using terms like ‘lymphadenctomy’ or ‘types of pharmacological treatments’ will make a leaflet or a brochure difficult to understand for many (perhaps most) of the people expected to read the material. On the other hand, these are the expressions patients may hear during their conversations with healthcare professionals. Health forums may also provide some indication of words that are presently being used by patients and the public. Current patient versions have provided terms and defined them in an understandable way, for example, in brackets after the term, separately in a box, or as part of a short glossary at the end of the document (both NICE and the German National Disease Management Guidelines Program do the latter for their guidelines).
The text size and colours used in graphics must be appropriate for the target audience (DECIDE patients and public).
Poor choice of colours can make a document hard to read; avoid using light text on light backgrounds and dark text on dark backgrounds. Some colour combinations may work better (or worse) on computer screens than in print.
Colour blindness affects about 1 in 8 men and 1 in 200 women, so should be considered when selecting colours for use in patient versions. Common types of colour blindness are:
- red/green colour blindness
- blue/yellow colour blindness
Avoid using these combinations of colours together. Similarly, the use of pale pastel colours is not helpful for people with visual impairments (DECIDE patients and public).
The use of colour can also convey meaning, which may not be what is intended. Black can sometimes be associated with death and red can be seen as highlighting danger (DECIDE patients and public). Inconsistent use of colour in documents can be confusing (DECIDE 2011 – 2015). Colour coding recommendations can be problematic and are required to take into account people’s pre-existing associations with colour, for example, red for stop, green for go (DECIDE patients and public). The way that colour is used to differentiate between recommendations needs to be clear in patient versions of guidelines (DECIDE patients and public).
A font with a clear design should be used to ensure accessibility. Use a minimum font size of 12 pt for standard versions and a minimum font size of 16 pt or larger for large print.
Give careful thought to the use of graphics. Patients and the public like the text to be broken up (DECIDE patients and public), but the graphic should carry useful information, not simply be a decorative element.
The way information is presented can affect perceptions of its trustworthiness. Using cartoons in a physical activity patient version, for example, meant that people had less trust in the information it contained; indeed it led people to question whether adults were the target audience at all (Berry et al. 2010, Loudon et al. 2014). However, cartoons have been helpful when addressing people with learning disabilities. Logos can help if these are a recognised ‘brand‘ for patients and the public, but too many becomes overwhelming and may be counter productive (DECIDE patients and public).
Table 4 provides some tips for using graphics.
Table 4 Tips for using graphics in patient versions
|Graphics relevant to the topic to illustrate what the patient version is aboutAnnotated diagrams to explain conditionsImages to break up the text to make the patient version patient friendlyMetaphorical images such as a blocked pipe to illustrate blood clot||Graphics that may be upsetting or patronisingComplex, technical diagramsCartoons, because these are difficult for patients to identify withToo many logos, which can be confusing for patients and distracting|