Participation and consultation engagement strategies have complementary roles: A case study of patient and public involvement in clinical practice guideline development

Abstract

Background: Patient and public involvement (PPI) is recommended when developing high-quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied.

Objective: To assess the impact of participation and consultation strategies on guideline question development.

Design: Instrumental case study design.

Setting and participants: This study used a clinical practice guideline in development by the American Academy of Neurology. A patient, two caregivers and a dementia advocate participated in the guideline development group alongside clinicians. The guideline protocol was posted for public consultation for 30 days.

Interventions studied: Participation (patient representatives on the guideline development group) and consultation (public comment, survey) PPI strategies.

Main outcome measures: Public comment responses and guideline development group meeting transcripts were analysed descriptively. Transcript quotes were compared to the conceptual model of PPI in guideline development. The effects of participation and consultation strategies within the guideline case were compared.

Results: Participation strategies shaped discussions, set a patient-centred scope, highlighted personal aspects of disease, affected how professionals viewed PPI, identified issues overlooked by medical professionals, and contributed to selecting patient-relevant guideline populations and outcomes. Professionals responded to public comment more than patient representatives. Patient survey participants confirmed the priorities voiced by patient representatives on the guideline development group. Final guideline questions included populations and outcomes promoted by patient representatives despite negative feedback from professional public commenters.

Discussion and conclusions: Participation and consultation PPI strategies have different advantages. Congruence between strategies increases the strength of the patient voice. Guideline developers should prioritize using both strategies for successful PPI.

Keywords: amyloid PET imaging; clinical practice guidelines; dementia; guideline adherence; guidelines as topic; patient and public involvement; patient participation; patient-centred care.