Ideally, patient-directed knowledge tools should be developed towards the end of the guideline development process, after confirmation of the full set of recommendations and their rationales. Recommendations change throughout the guideline development process and this will avoid having to revise the information each time. Patient-directed knowledge tools should preferably be produced by the patients and healthcare professionals who have already been involved in developing the guideline on which the information is based. During the guideline development process, the group can systematically prioritise situations that require in-depth conversations between healthcare professionals and patients (Association of the Scientific Medical Societies in Germany 2020).
The guideline group can also discuss content beyond that to be included in the guideline, which could or should be covered by patient-directed knowledge tools. So, it is helpful to have the tools in mind when starting the guideline to inform the process of tool development. Patient or consumer organisations may also produce patient-directed knowledge tools, such as educational materials and patient versions of guideines, all of which can then be reviewed by the healthcare professionals and patients who developed the guideline. Developing information for patients and the public together with them helps promote readability and ensures that information is relevant to its readers.
The case study in table 2 shows how the Scottish Intercollegiate Guidelines Network (SIGN) developed the patient version of their guideline on migraine.
There are many ways to ensure that the information in the patient version reflects patients’ needs and experiences. Although collaboration of clinicians and patients during the whole development process of the patient version is desirable, it may be more feasible to have collaboration at particular stages of the process, for example at the planning and consultation stages (Schafer et al. 2017).
Table 2 Development of the patient version of the SIGN guideline on migraine
| When did SIGN start developing the patient version and what was the timescale? | SIGN started developing the patient version when the guideline was at the editorial stage of the guideline development process. The production process for the patient version took 7 months, including consultation and editorial stages. |
| Who did SIGN involve in the development process? | Two clinicians and 2 patients from the guideline group were invited to participate in a subgroup responsible for producing the patient version of the guideline. This made it easier to make the guideline and patient version complementary. A volunteer member of the public was also invited to join this group to provide an objective user perspective. Members of the guideline group provided quality assurance checks on the patient version to make sure it accurately reflected recommendations in the guideline. |
| How were recommendations selected for inclusion in the patient version of the guideline? | The group held face-to-face meetings to select recommendations that patients would find helpful and could influence, for example choice of medication. Patient-important outcomes, patient values and preferences for a recommendation, and the need to consider these in the patient version, were discussed with the full guideline group during development of the guideline. The group agreed how much information on medication and side effects would be useful to help with decisions. The group discussed what other information would be required in the patient version to help with understanding the recommendations. |
| How did SIGN include information that was important to patients but not recommended in the guideline? | There were a few ideas for content from patients and the member of the public that did not come directly from the guideline. It was decided that these were important to include. So they were presented differently from recommendations, for example, not in recommendation boxes, to make this clear to the information users. |
| How did SIGN gather feedback on the patient version of the guideline? | The draft patient version was available for consultation for 4 weeks. The full guideline group, voluntary organisations and members of SIGN’s patient and public involvement network were invited to provide feedback. Feedback was compiled into a consultation report and shared with the group responsible for developing the patient version. Feedback was used to improve the booklet. |