Improving sarcoidosis patients’ care with a collaboratively developed, patient centered program

Cleveland Clinic Lerner Com-Cwru, Cleveland OH

Investigators

Linked publications & trials

Abstract

ABSTRACT The purpose of this K23 Career Development Award is to support Dr. Logan Harper’s advancement as an independent investigator focused on improving outcomes in sarcoidosis populations. This funding will support his research program aimed at developing a patient-informed intervention to address upstream contributors to outcome variation in individuals with sarcoidosis. The structured mentoring plan includes hands-on experience in administering and analyzing data from a large, prospective patient questionnaire study, and applying participatory research methods to collaboratively design and pilot test an intervention responsive to patient-identified challenges in care. This practical experience will be enhanced by structured coursework in statistical methods and participatory research approaches. Dr. Harper will be guided by a multidisciplinary team of mentors, including Dr. Daniel Culver, a leading authority on sarcoidosis; Dr. J. Daryl Thornton, an expert in population-based research; and Dr. Raed Dweik, a proven mentor of early career physician-scientists. Under their guidance, Dr. Harper has previously quantified the impact of social and contextual factors on clinical outcomes in sarcoidosis and conducted interviews with individuals living with the disease to identify meaningful contributors to outcome differences. These efforts support the feasibility of the current proposal, which aims to: (1) quantify the relationship between patient-reported challenges in accessing care and sarcoidosis outcomes; (2) use participatory methods to co-develop an intervention targeting the most influential contributors to poor outcomes; and (3) pilot test this intervention to assess feasibility, uptake, and identify appropriate metrics for a future randomized trial. Completion of the proposed work will generate the most comprehensive assessment to date of patient-reported contributors to outcome variation in sarcoidosis and lay the foundation for a future multi-center trial of a novel, patient-informed strategy to improve outcomes in a high-risk population. The structured training in this award is designed to prepare Dr. Harper to obtain future research funding and achieve his long-term goal of becoming an independent clinician–scientist.