Adapting the prioritisation stage for patient and public members
Certain tasks in a living guideline, such as identifying important priority areas to be maintained as living, might need to be adapted for patient and public members unlike for clinicians. For example, to identify an essential priority area, group members might need to have knowledge of ongoing clinical trials or those trials for which data are about to be published. Although patient and public members might know about some of these trials, developers cannot expect that all patient and public members will do. Therefore, adapting the task for patient and public members and giving guidance on how they can contribute to a prioritisation exercise can help them to be effective. For example, presenting a summary of the latest developments in the guideline area and then inviting patient and public members to highlight key topics of interest to patients can assist them to prioritise the order for updating recommendations. This can be helpful when there are multiple recommendations to update (for example, on psychological support, neoadjuvant chemotherapy, breast cancer, menopause) but staff resources are limited.
Setting priorities in real time
Guideline topics and questions would likely be prioritised at the start of developing a living guideline but may be revised at multiple points during its lifecycle. In some ALEC living guidelines (for example, pregnancy and postnatal care), this has meant inviting the patient community to take part in formal priority-setting processes at the beginning. Then later, inviting anyone in the community to submit questions or raising clinical points about which there is some uncertainty, which can be addressed through a recommendation. An online form on the guideline webpage is used to help this engagement.
While developing the Caring for Australians and New ZealandeRs with kidney Impairment (CARI) living guidelines for autosomal dominant polycystic kidney disease, patient and public members were able to raise, and advocate for, timely new guideline questions and topics. This fast feedback on the guidelines improved their relevance for patients and showed the trustworthiness of the process and value of the participation, as described in the case study on the guideline.
Case study: Real-time priority setting with patient and public members in a living kidney disease guideline
CARI living guidelines
The first scope for the autosomal dominant polycystic kidney disease living guidelines was intentionally narrow, focusing on high-need aspects to ensure timely completion. The guideline working group began by basing the scope on 2 topics recently examined in clinical trials: a disease-modifying medication and fluid intake. The guideline development group included 2 patient and public members with lived experience of the disease who had contributed to the guideline organisation over the past 5 years. The trust and reciprocity developed over this period, and being able to discuss the guideline scope at the early meetings, allowed the patient and public members to provide a perspective that the clinical members had not considered. The patient and public members, through their active engagement with the patient community on social media, recognised the need for guidance on using ketogenic diets in managing the disease.
Ketogenic diets were a topic of active discussion in the community because of the marketing of the diet together with a supplement, which could be bought at a substantial cost. Patient and public members considered that it was a high priority topic that would support patients in their self management, and it would also enhance the community’s confidence that the guidelines assessed the highest priority areas in the disease. The living approach to prioritisation allowed a pilot trial to be quickly included during the guideline development, so that its findings were later published and incorporated in the evidence review. |