Users of patient-directed knowledge tools should be encouraged to provide feedback on the information. Feedback should be collected and considered when updating the information. Ways to collect feedback may include a structured questionnaire at the end of the information, tests with focus groups, or surveys. It can also be useful to ask for feedback from other stakeholder groups, because they might be able to assess the extent to which the patient-directed knowledge tool helped their patients who are members. 

Getting feedback on patient versions of guidelines

Asking a wider group of patients and public for input and feedback on the patient version can help ensure it is accessible to the target audience (SIGN 2019, van der Weijden et al. 2019). The chapter on how to conduct public and targeted consultation provides more details. The purpose of collecting feedback is to ensure the patient version:

• Provides useful information that helps patients make decisions.
• Provides patients with further experience and support regarding coping strategies or other issues that are not covered by the guidelines, but may matter to patients in their daily life. These can be provided directly in the patient version or indirectly through links to sources of further information and support.
• Is seen as relevant to patients and consumers.
• Has a useful layout that patients can effectively navigate.
• Uses appropriate language, fonts and graphics.

Various methods can be used to obtain feedback, depending on the intended audience and the intended goals. For example, an open consultation can help to foster ownership and transparency, whereas workshops can help to obtain specific feedback on relevance to readers and their level of understanding. Other methods include:

• Circulation of the document to guideline developers’ own patient or consumer networks and voluntary organisations for written comment.
• Use of discussion groups to provide feedback, for example a discussion group with children and young people may be more effective than written consultation.
• Consulting patient organisations who have broad experience with patient counselling and collect data on individual experiences.

An example of questions guideline developers may want to ask patients and consumers is given in appendix 1. To ensure transparency, the methodology and process of development should be well documented. The case study in table 2 shows how SIGN gathered feedback on their patient version of the migraine guideline.