Evidence about patient views and experiences can be used throughout the development of a guideline, including its recommendations. This section provides an overview of the development stages with a brief description relating using research on patient views to each stage. (The sections on how research can be summarised and presented for use, how research evidence can be summarised in the guideline, and what to do when no methods are available provide more detail about how to incorporate this evidence.) Each step in the guideline development process is illustrated in figure 1, from the GIN-McMaster Guideline Development Checklist (2014). Although research evidence can be used at all stages, most opportunities are in the inner area of the diagram (outlined by the black box and from Question Generation to Dissemination & Implementation), because many of the stages on the outer perimeter (including Priority Setting, Organisation, and Conflict of Interest Consideration) will be predetermined by macro- and organisational level decisions.

Figure 1 Diagram outlining stages of guideline development provided in the GIN-McMaster Guideline Development Checklist

One of the earliest and most important steps to ensure the usefulness of a guideline and its recommendations is answering questions that stakeholders (for example, practitioners, policy makers, patients and public) have about a topic. Typically, a guideline group will generate a list of questions about the interventions or tests that should be covered, and the important outcomes for which evidence is needed. The questions and the outcomes identified will in turn determine the direction of the systematic reviews to summarise the evidence. The group, however, may need to prioritise that list when there are many questions. Guideline developers can consult and conduct their own research with patients and the public, and key population groups, to determine what is important to them (see the chapter on how to conduct public and targeted consultation). However, before embarking on this research, developers may investigate what research is already available (published in traditional journals or in the grey literature in patient organisations and websites) to inform their own research and avoid conducting new research.

When developing recommendations, a guideline group will consider the evidence for benefits and harms of an intervention or test, and in doing so will need to consider the magnitude of the benefit or harm and the value placed on those outcomes. For example, suppose the question is about whether to recommend a new intervention to prevent cancer that may also have some side effects? The new intervention may reduce the risk of cancer by 5/100,000 over 20 years, but increase the risk of a debilitating stroke by 10/100,000. If the values placed on the risk of cancer and strokes are equal, then the new intervention may not be recommended because it increases strokes. However, if the value placed on the risk of cancer is greater than the value placed on a stroke, then the recommendation may be to provide the new intervention. This is because, although there are fewer cancers, reducing the risk of cancer has a greater weight than the risk of strokes. Another consideration is whether patients value outcomes differently from each other, which may also have an impact on weighing the benefits and harms. It is clear from this example, how important it is to consider the value placed on outcomes. But developers may not consider this information and, in particular, may not consider the value that patients place on those outcomes (Gärtner et al. 2019).

Considerations of the effects of interventions is 1 component of developing recommendations for which evidence should be summarised. But other factors, such as acceptability and burden of an intervention to stakeholders, costs and resource use, effects on equity, and feasibility, will also need to be considered. The Evidence to Decision framework can be used to help guideline groups move from evidence to making recommendations or /decisions by considering all of the factors (Alonso-Coello et al. 2016). To illustrate the importance of summarising and using this type of information, consider that there may be evidence that 1 intervention is more acceptable to (or preferred by) most patients because it involves less burden. For example, patients might prefer a single intramuscular injection every 6 months rather than a pill once daily. This preference could have an impact on whether 1 intervention is recommended rather than another. In the same way, costs and resources may influence recommendations. If patients consider a new intervention to prevent cancer more costly compared with a currently used intervention, decision makers may decide to recommend against it. In another example, if an intervention is more accessible with good uptake by patients, for example, in poorly-resourced settings (potentially increasing equity as well), a guideline group may consider recommending it rather than less accessible treatments. Or the guideline group may consider how to make other treatments equally accessible.

Information from research on patient views about the challenges when disseminating and implementing recommendations may also be used to inform the guideline. Some research has indicated that the wording of recommendations can have an impact (Gagliardi et al. 2011). For example, the language used, if appropriate to the context of the specific patient population, may predict the success of implementation. Therefore, research on terminology and phrasing for patients on a topic or disease area may be helpful when writing recommendations (see more in chapter about how to develop information from guidelines for patients and the public). In addition, research evidence about different strategies to reach patients that is related to the guideline topic will also be useful when a guideline group is determining how to disseminate and implement their specific guideline and recommendations to the target population.  Examples include use of decision aids, pamphlets, or social media. (See more in the chapter on involving patients and the public in guideline dissemination and implementation.)