The National Academy of Medicine report “Improving Diagnosis in Health Care” highlights several key issues that must be addressed to improve diagnostic quality, including the urgent need for research on the diagnostic process and diagnostic errors. The report identifies that “the diagnostic process and the challenge of diagnostic errors have been neglected within the national health care research agenda.” Even more understudied is the importance of patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) strategies in diagnostic research projects.
The Society to Improve Diagnosis in Medicine (SIDM) is the nation’s only organization dedicated to ending harm from missed and delayed diagnosis. In pursuit of that mission, SIDM aims to empower researchers to utilize PCOR and CER strategies in research projects that will improve diagnosis. This initiative utilizes patients and researchers to collaboratively develop a training workshop for researchers interested in PCOR and CER. The resulting Diagnostic Researcher Workshop will be held in conjunction with the 2019 Diagnostic Error in Medicine conference.
This project is designed to capitalize on growing interest in improving diagnostic quality: to further increase the skills and knowledge of PCOR in the diagnostic research community; and to build a multi-stakeholder community empowered to pursue diagnosis PCOR and CER studies. The long-term objective is to promote more robust submission of research proposals to funders that engage all the relevant stakeholders and answer questions related to achieving a timely and accurate diagnosis that matter most to patients.
This project is designed to achieve two key outcomes: help at least 40 researchers become knowledgeable about PCOR and CER and publish a toolkit including the PCOR/CER Research Workshop agenda, case studies, and related PCOR and CER materials. SIDM intends to use the project content and materials as part of ongoing efforts to expand diagnostic research.
This project is a natural evolution of the Patients Improving Research in Diagnosis (PAIRED) initiative funded by a Eugene Washington PCORI Engagement Award. PAIRED developed a curriculum and trained 20 patient partners representing key patient organizations to be co-designers in the planning, conduct, and dissemination of diagnosis PCOR and CER research. The Diagnostic Researcher Workshop program development, delivery, and evaluation will be co-produced by relevant PAIRED patient partners, PAIRED mentors, select PAIRED research advisors, and SIDM staff. The Diagnostic Researcher Workshop will draw from and integrate important learning components from the PAIRED curriculum.