Online Program

Importance of Engaging End-Users in Intervention Research Study Design: Lessons Learned from the CHICAGO Trial

Monday, November 2, 2015 : 8:30 a.m. - 8:50 a.m.

Molly A. Martin, MD, Department of Pediatrics, University of Illinois at Chicago, Chicago, IL
Kim Erwin, Illinois Institute of Technology, Chicago, IL
Stacy Ignoffo, MSW, Chicago Asthma Consortium, Chicago, IL
Kate McMahon, MPH, Programs and Policy Department, Respiratory Health Association, Chicago, IL
Valerie Press, MD, University of Chicago, Chicago, IL
Helen Margellos-Anast, MPH, Sinai Urban Health Institute, Sinai Health System, Chicago, IL
Jessica Ramsay, MPH, AE-C, Sinai Urban Health Institute, Sinai Health Systems, Chicago, IL
Helene Gussin, PhD, University of Illinois at Chicago, Chicago, IL
Michael Berbaum, PhD, Institute for Health Research and Policy, University of Illinois at Chicago, Chicago, IL
Rajesh Kumar, MD, Lurie Children's Hospital, Chicago, IL
Cortland Lohff, MD, Chicago Department of Public Health, Chicago
Giselle Mosnaim, MD, Preventive Medicine, Rush University Medical Center, Chicago, IL
Sharmilee Nyenhuis, MD, University of Illinois at Chicago, Chicago
Soyemi Kenneth, MD, MPH, Department of Pediatrics, Division of Emergency Medicine, John H Stroger Jr. Hospital of Cook County, Chicago, IL
Jerry Krishnan, MD, PhD, Department of Pulmonary, Critical Care, Sleep, and Allergy, University of Illinois at Chicago, University of Illinois Hospital and Health Sciences System, Chicago, IL

The Coordinated Healthcare Interventions for Childhood Asthma Gaps in Outcomes (CHICAGO Trial) was funded to conduct a 3-arm multicenter pragmatic trial to evaluate interventions to improve asthma control in high risk Chicago children. In preparation for the trial, the study team conducted a formative evaluation with end-users.


In the summer of 2014, we engaged caregivers of children with asthma through focus groups (2 groups, N=9) and user-centered interviews (N=9), and conducted a focus group with asthma CHWs (N=8), to collect their experience.  Additional stakeholder input was obtained through key informant interviews at each of the six emergency department (ED) clinical sites with ED-based providers, administrators, nurses, and ambulatory providers. ED tours and observations were also conducted at each site.


The primary intervention in EDs is delivery of a redesigned discharge asthma action plan. Input from the caregivers, CHWs, and providers suggested multiple design modifications to this instrument to improve its utility to caregivers and providers. The results also revealed that ED discharge protocols typically include patient education at a single point in time, usually just as families are preparing to leave the ED and are least ready to take full advantage of interactions with ED staff.  The CHICAGO Trial study design was therefore modified to reposition self-management education so that it occurs at various “teachable moments” during the treatment and observation period.


Engagement of end-users in the design phase of implementation research is a critical step to ensure research feasibility and relevance.

Learning Areas:

Assessment of individual and community needs for health education
Chronic disease management and prevention
Implementation of health education strategies, interventions and programs
Social and behavioral sciences

Learning Objectives:
Describe the process of engaging end-users in research planning. Discuss the value added to implementation research by engaging end-users early in the design process

Keyword(s): Asthma, Partner Involvement

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I led the research and wrote the abstract.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.