Abstract
BackgroundPatient and public involvement (PPI) is recommended when developing high‐quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied.ObjectiveTo assess the impact of participation and consultation strategies on guideline question development.DesignInstrumental case study design.Setting and participantsThis 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 studiedParticipation (patient representatives on the guideline development group) and consultation (public comment, survey) PPI strategies.Main outcome measuresPublic 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.ResultsParticipation 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 conclusionsParticipation 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.
Highlights
Patient and public involvement (PPI) is recommended when developing high-quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied
Given that minimal research has evaluated the relative contributions of different PPI strategies to guideline development, we aimed to assess the effect of participation and consultation on guideline question development
Despite the fact that the patient representatives accounted for less than 10% of the retreat transcript, there was evidence that the participation of the individual with MCI/early Alzheimer's disease (AD), two caregivers and the dementia advocate affected guideline development as described in the conceptual model[20]: they shaped how discussions were conducted, helped set a patient-centred scope, highlighted the personal aspect of the disease, identified issues that might be overlooked by medical professionals and helped select patient-relevant topics and outcomes (Table 2)
Summary
Patient and public involvement (PPI) is recommended when developing high-quality clinical practice guidelines, but the effects of different PPI strategies are largely unstudied. Setting and participants: This study used a clinical practice guideline in development by the American Academy of Neurology. 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. 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. Final guideline questions included populations and outcomes promoted by patient representatives despite negative feedback from professional public commenters. Congruence between strategies increases the strength of the Health Expectations. 2020;23:423–432.
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