Improving the user experience of patient versions of clinical guidelines: user testing of a Scottish Intercollegiate Guideline Network (SIGN) patient version

Abstract

BackgroundGuideline producers are increasingly producing versions of guidelines for the public, and knowledge of what the public want from them is also increasing. The aim of this study was to user test a patient version of a SIGN clinical guideline that was designed based on preliminary work for the DECIDE project. SIGN is the leading national guideline producer in Scotland.MethodsPeople with a diagnosis of glaucoma and non-professional carers were recruited from across Scotland. User testing was conducted using a think-aloud protocol method. Each session was conducted by one interviewer and one observer. All sessions were recorded and transcribed. The data was analysed, problems with the guideline were identified and resolved and key findings were themed using a user experience model.ResultsThirteen user testing sessions with people with glaucoma and one with a carer were conducted. Key facilitators of desirability and usability identified include clear branding as a patient version and a clearly described purpose, audience and contents page. Other facilitators include a “friendly” tone which is achieved by the use of colour, quotes, icons, simple language and charts, and brief chunked text.The value and usefulness of the patient guideline was influenced by its ability to: inform the public, link information to actions, and empower people in their interaction with healthcare professionals. Participants were disappointed by the lack of information on treatment in the patient version, which was outside its scope.Information on the evidence based guideline production process and the involvement of appropriately skilled professionals was key to the credibility of the guideline. Lack of awareness of guidelines and guideline producing bodies, is a potentially serious threat to findability/accessibility.ConclusionsIt is important for guideline producers to maximise the user experience of the public when they access patient versions of guidelines, particularly given the current low level of access and awareness. One size does not fit all and guideline producers need to strike a balance between keeping the patient version simple and providing sufficient information to facilitate shared decision making and empower the public. Guideline producers may find the results of this study useful in designing their own patient versions.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-016-1287-8) contains supplementary material, which is available to authorized users.

What do patients and the public know about clinical practice guidelines and what do they want from them? A qualitative study

“…This has led DECIDE to suggest layering of information in guidelines [ 7 ] with the most important information (generally the recommendation) being presented first and then users can access more detailed information if they want it, down to the full evidence profile. Layering is possible even within a paper document using colour or boxes, as done by the Scottish Dental Clinical Effectiveness Programme in their patient guideline on preventing gum disease [ 21 ] and SIGN in their glaucoma guideline patient version [ 22 ], which attracts readers to the recommendations first.…”

What phytotherapy needs: Evidence‐based guidelines for better clinical practice

“…In addition to GRADE, important work has been carried out by the Scottish Intercollegiate Guidelines Network (SIGN), which has excellent experience in producing guidelines (Fearns, Graham, Johnston, & Service, ; Scottish Intercollegiate Guidelines Network, n.d.). Their Guideline Developer's Handbook (Scottish Intercollegiate Guidelines Network, ) could act as a basis for developing phytotherapy guidelines.…”

“…Both GRADE and SIGN focus on optimising the public user experience when accessing patient versions of any guidelines. The difficulty is striking a balance between the need for simplicity of the patient version and provision of sufficient information to facilitate shared decision‐making (Fearns et al, ). Freely available and simple guidelines could eliminate many uncertainties, provide information about possible risks and contraindications, and improve the reporting of side effects.…”

American Association of Clinical Endocrinologists and American College of Endocrinology Protocol for Standardized Production of Clinical Practice Guidelines, Algorithms, and Checklists – 2017 Update

“…insurance companies, government and regulatory agencies, patient advocacy groups, and others would clearly advance CPG development and implementation (16). Additionally, simpler patient versions of CPG will need to be developed and implemented as shared decision making becomes more prevalent (92). This patient-centered implementation strategy will also need to include input from users (e.g., HCP, patients, and patients' families) to take into account culturally sensitive acceptable medical outcomes and then formulate clear health-related quality of life metrics for optimal results (93,94).…”