ISAAC: Improving Sickle cell care for Adults and Adolescents in Chicago
Team: Sarah Braunstein (M.Des 2018), Shangyanyan Li (M.Des 2017), Vidya Mantrala (M.Des + M.B.A 2019), and David Pollack (M.Des + M.B.A 2019)
Advisors: Kim Erwin, Sarah Norell
In partnership with: The Population Health Sciences department at UI Health.
ISAAC is a 5-year National Heart, Lungs, and Blood Institute (NHLBI) funded project to improve the medical experiences of patients suffering from sickle cell disease within the Chicago area, which is a national hotbed for this particular condition. I was a part of a 4-member research team that focused on a "needs assessment" for designing a "pain passport", a solution to drive more effective communication between patients and providers in times of pain crises.
A Complex Patient in a Complex System
Sickle cell patients have a lot of very unique challenges. While sickle cell disease is the most prevalent genetic blood disorder, its small numbers (<100,000 diagnosed patients in the USA) forces it to get de-prioritized from a lot of governmental considerations. Further complicating the situation is the fact that it pre-dominantly affects people of certain ethnic groups, and it is characterized by episodes of extreme pain, only treatable with heavy doses of narcotics.
Strengthen communications
As a research team, we were tasked with deeply understanding the nuances of this disease both from the perspective of patients and community members as well as health care practitioners, both within sickle cell specialty clinics such as the clinic at University of Illinois - Chicago, as well as Chicago Area emergency department staff. From these insights, we identified opportunities to better facilitate the management of this disease.
Secondary Research
To fully understand the implications of Sickle Cell Disease, as a team we conducted a literature review of 30 papers regarding sickle cell disease treatment in emergency departments as well as transitioning care from pediatric to adult practice. From this research we developed a vocabulary and initial hypotheses around the biggest barriers to successful management of this and analogous chronic diseases. In this phase of the research, my focus was around developing context around adolescent care.
I developed definition cards to document different keywords around adolescent care. These keywords were not only defined, but tied back to the overall scope of the project by also being explained in terms of how they mattered in the overall patient experience.
Keyword cards to build context
Communication framework
Primary Research
Over the course of the summer, I helped conduct:
3 interviews
1. Emergency Department attending physician
2. Emergency Department nurse
3. Sickle Cell Clinician interview
1 emergency department observation/tour
I also developed a communication framework, that continues to be used by students at my institution today to understand scope of influence in healthcare-related systems.
Coding And Analysis
Over the course of the summer, we ended up analyzing:
16 interviews including sickle cell specialists, emergency department physicians and nurses, social workers, community health workers and advanced practice nurses from the UIC Acute care center
5 direct observations including emergency departments, inpatient care, and support group
Our team used grounded theory to code and analyze this variety of qualitative data in a robust and defensible way and discover the major themes around sickle cell care from multiple stakeholder perspectives. This process was first conducted individually and then as a team to ensure consistency among all the researchers' analysis.
Example of consolidating codes based on each team member's analysis
Insights
From our analysis we discovered two main areas of insight:
1. Barriers to Transfer: Emergency Department providers had a hard time understanding when and how patients should be transferred between the Emergency Department and the Acute Care Center (a specialty department with expertise in treating patients suffering from severe pain crises.)
2. Variation in Treatment Practices: Given the highly addictive and regulated nature of the narcotics given to treat pain crises, different providers have different levels of comfort with prescribing these medications. This could be due to differences in training, or assessments of patient priority, or simply personal values.
Service Design
From the variety of stakeholder perspectives both within and outside of the UI Health System, we developed a service blueprint for the care a sickle cell patient receives when they experience a pain crisis and need to visit the emergency department. In this process, we identified areas in pre-arrival, triage and treatment where the university system has opportunities to improve the patient experience. For a more detailed description of the work and insights, feel free to explore our summer presentation!
Service blueprint of the care a sickle cell patient receives in the emergency department today; green stars indicate opportunities for improvement