Patient-directed knowledge tools should prioritise the recommendations that patients can influence or discuss with their healthcare professional. For example, a recommendation about how a pathologist should prepare a biopsy would not be helpful because patients would never be able to discuss this with the pathologist. Research conducted by DECIDE with patients and the public has shown that people would like recommendations about managing their own care. The challenge with this is finding a sensible way of selecting the recommendations that should be presented in patient-directed knowledge tools. The best way of doing this is to involve patients, their carers and the public in the selection of recommendations, either from within the guideline development group or through a parallel group working on patient-directed knowledge tools (SIGN 100 2019, van der Weijden 2019). Box 3 summarises the questions that can be used to aid selection of recommendations for inclusion in patient-directed knowledge tools. The case study in table 2 shows how recommendations were selected for inclusion in SIGN’s guideline on migraine.
Being clear on the intended target group and situation, that is, when patients will receive patient versions of guidelines, is important because this will influence which recommendations should be included and how they should be presented. For example, will they receive it before a hospital appointment? Will they have the opportunity to discuss it with a healthcare professional? If a condition has been diagnosed before they get a patient version, it may not be helpful to include recommendations on diagnostics or risk factors.
Box 3 Questions to ask when choosing recommendations
- Do they highlight options for interventions or care?
- Do they assess harms and benefits of the intervention in question and empower patient to make informed decisions?
- Do they assess harms and benefits of the treatment intervention in question and empower patients to make informed decisions?
- Do they recommend lifestyle interventions and ways in which the patient can take steps to manage their condition?
- Do they identify treatments that have no evidence of benefit?
- Can the recommendations help patients to understand their own condition?
- Do patients and the healthcare professional see a need for intensive conversation?
- Do they address relevant situations of over- or underuse? (this is extremely relevant in the context of diagnostic or screening recommendations)
- Do they address adherence?
- Are there barriers to the implementation of the recommendation, that could be resolved through discussion with the patient (for example, safe use of medicines)?
After the development group has selected recommendations to be included in patient-directed knowledge tools, they should be translated into plain language to allow them to be easily understood by a wide audience. If further information is needed to understand the recommendations (like anatomy, physiology or other information), it should be provided either along with the recommendation or in specific sections or paragraphs.
[LG1]Please change to ‘See the chapter on dissemination and implementation for further information’ when that chapter is published, and add a link to it.