Abstract Details

Title A Patient Registry to Identify Barriers to Health Care in an Underserved Parkinson’s Disease Population

Topic Health Care Disparities

Presentation(s) P4 - Poster Session 4 (8:00 AM-9:00 AM)

Poster/Presentation
Number 4-004

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.

Authors/Disclosures
Stephanie L. Bissonnette, DO PRESENTER	The institution of Dr. Bissonnette has received research support from SAGE Therapeutics. The institution of Dr. Bissonnette has received research support from Huntington's Disease Society of America. The institution of Dr. Bissonnette has received research support from CHDI Foundation.
	No disclosure on file
	No disclosure on file
Katelyn C. Bird, MD	Dr. Bird has nothing to disclose.
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
	No disclosure on file
Cathi Ann Thomas, RN, MS	Ms. Thomas has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Avion.
Marie-Helene Saint-Hilaire, MD, FRCPC, FAAN (Boston University School of Medicine)	Dr. Saint-Hilaire has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Altec. Dr. Saint-Hilaire has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for advarra. Dr. Saint-Hilaire has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Parkinson study group.
Ludy C. Shih, MD, FAAN (Beth Israel Deaconess Medical Center)	Dr. Shih has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Encora Therapeutics. Dr. Shih has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for WCG Medavante. Dr. Shih has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Ventyx Biosciences. Dr. Shih has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Aspen Neuroscience. Dr. Shih has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Medtronic. Dr. Shih has received personal compensation in the range of $5,000-$9,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Wiley. The institution of Dr. Shih has received research support from Praxis Precision Medicines. The institution of Dr. Shih has received research support from Tremor Research Group. The institution of Dr. Shih has received research support from Denali Therapeutics. The institution of Dr. Shih has received research support from University of Rochester. Dr. Shih has received personal compensation in the range of $500-$4,999 for serving as a Consultant with German Accelerator. Dr. Shih has received personal compensation in the range of $500-$4,999 for serving as a Grant Reviewer with National Institutes of Health. Dr. Shih has received personal compensation in the range of $500-$4,999 for serving as a Grant Reviewer with Michael J. Fox Foundation. Dr. Shih has received personal compensation in the range of $500-$4,999 for serving as a Grant Reviewer with Johns Hopkins. Dr. Shih has a non-compensated relationship as a Co-chair, Scientific Program Committee and President-Elect with American Society of Experimental Neurotherapeutics that is relevant to AAN interests or activities.

��ɫ��

��ɫ��