A Patient Registry to Identify Barriers to Health Care in an Underserved Parkinson’s Disease Population
Stephanie Bissonnette1, Rosemary Owen1, Ashley Martin2, Katelyn Bird2, Michael Stevenson2, Ray James1, Rebekah Lee2, Abigail Desrosier2, Theresa Ellis3, Nicholas Wendel3, Helen Bresler2, Bertha Lee4, Cathi Ann Thomas1, Marie-Helene Saint-Hilaire1, Ludy Shih1
1Boston University School of Medicine, 2Boston Medical Center, 3Boston University Sargent College of Rehabilitation, 4Massachusetts College of Pharmacy and Health Sciences
Objective:
To describe the development of an electronic health records (EHR)-based registry that captures demographics and outcomes for a diverse population at a safety net hospital.
Background:
Disparities in Parkinson’s disease (PD) care are well documented. Evaluating practice disparities is important at Boston Medical Center (BMC) where 57% of patients are medically underserved. We sought to use EHR tools to examine barriers to standard PD care.
Design/Methods:
An EHR-based (EPIC, Epic Systems, Verona, WI) report was created using EPIC registry tools that leverage existing data in our EHR and organizes it for reporting and monitoring. The registry is composed of an inclusion rule, which defines criteria required for inclusion in the registry, and metrics that determine the information collected about each record. A workbench report was generated consisting of: patients with PD as diagnosis or problem, demographics, physical therapy (PT) details, and social determinants of health (SDOH).
Results:
899 patients were included in report for analysis. 44% were female. Common languages spoken included English (79%), Spanish (8%), Haitian Creole (4%), Vietnamese (2%). Hispanic ethnicity was identified by 11%. Racial demographics included 57% White, 14% African-American/Black, 7% Hispanic, 4% Asian, and 16% declined/unknown. Referrals to PT were documented in 50% of patients (54% of these White, 19% African-American/Black, 8% Hispanic, 4% Asian and 13% declined//unknown). 9% had a BMC PT visit (39% of these African-American, 26% White, 15% Hispanic, 2% Asian and 14% declined/unknown). Top SDOH recorded were food insecurity, transportation need, and utility difficulties.
Conclusions:
We demonstrate the feasibility of creating an EHR-based registry to identify current practice patterns and SDOH. The data from the registry will allow for further exploration of barriers to standard PD care and innovative strategies to close gaps. Registry development may be feasible for PD clinics looking to capture baseline demographics, assess SDOH, and evaluate clinical outcomes.