Enhancing Clinical Guideline Development via Patient and Stakeholder Engagement

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 DESCRIPTION (provided by applicant): This AHRQ Mentored Clinical Scientist Research Career Development Award (K08) is designed to provide the Principal Investigator, Dr. Melissa Armstrong, with the training and skills needed for an independent career in health services research focusing on improving the clinical practice guideline (CPG) development process through patient engagement. The proposed research investigates the impact of patient, family, and advocate involvement on developing CPG questions. The inclusion of patients and stakeholders in guideline development is now recommended practice. Despite this, the effect of patient and stakeholder involvement on guidelines remains unknown. The study aims are to: (1) investigate the effect of patient, family, and advocate involvement on guideline question formation by comparing results of guideline development groups (GDGs) with and without their involvement, (2) compare importance ratings between patients, families, advocates, and content experts for each element of the proposed guideline questions, and (3) identify the effect of patients/families/advocates (Aim #1) and importance scores (Aim #2) on final consensus guideline questions. The proposed research is based on the PI's neurological expertise and will make use of an upcoming American Academy of Neurology guideline project regarding the use of beta-amyloid imaging in patients with - or at risk for - dementia. Two GDGs will be convened to develop the guideline questions: a "control" (routine practice) GDG of health care professionals (HCPs) alone and an "experimental" GDG including HCPs and patients, family, and advocates. Differences in guideline questions and analytic frameworks will be analyzed qualitatively. For Aim #2, patients, family, advocates, and HCPs/content experts will rate the importance of each component of the guideline questions (e.g. relevant outcomes) on a 9-point ordinal scale. Three levels of patient/family/advocate and HCP ratings will be surveyed: those on the GDGs, those participating in online public comment, and via survey of the larger population. Differences in importance ratings will be compared using Wilcoxon Rank Sum Tests. For Aim #3, a qualitative analysis will compare the final consensus CPG questions to the questions posed in Aim #1. To achieve these aims, Dr. Armstrong will use mentored skills including training in patient engagement, patient-centered outcomes research, qualitative methods, and dissemination/implementation strategies. Investigating the effect of patient, family, and advocate involvement on CPGs is critical in order to address important healthcare questions such as whether guideline developers miss key questions by excluding these stakeholders, whether guidelines are addressing health outcomes of importance to patients, and whether variable stakeholder engagement explains CPG inconsistencies. The knowledge gained from this study will further the ultimate goal of understanding whether patient engagement facilitates CPG acceptance and implementation by end-users in order to enhance provision of evidence-based and personalized healthcare for millions of Americans with chronic disease.