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.
This study investigates the impact of involving patients, families, and advocates on clinical practice guideline (CPG) question development in order to understand whether CPGs developed without patient and other stakeholder involvement may miss key patient-centered questions and whether this may explain inconsistencies between guidelines. The study has the potential to improve public health by using patient engagement to improve CPG acceptance and implementation, thereby enhancing the delivery of high-quality, evidence-based, patient-focused health care. This research addresses AHRQ's mission to investigate and validate guideline standards, translate scientific evidence to improve informed health care decision-making, and develop methods for patient engagement.
