# Navigating Online Patient Experiences of Genomic Medicine: Identifying and Overcoming Obstacles for African American Communities

> **NIH NIH R21** · BOSTON CHILDREN'S HOSPITAL · 2022 · $292,975

## Abstract

ABSTRACT/PROJECT SUMMARY
Background. Genomic medicine has the potential to optimize diagnostic, risk prediction, prevention, and
treatment decision-making processes. As technologies for measuring genetic variants have become more
cost-effective and improved, clinical integration of genomic medicine has been surprisingly slow. For genomic
medicine to be successfully implemented across specialties and across demographics, the systemic barriers
that patients experience need to be identified and addressed.
Significance and Innovation. Most of the literature that has investigated these barriers examined them in
relation to a specific disease. Rarely have studies contextualize barriers to genomic medicine implementation
within macro-level factors across a spectrum of diseases and with a focus on how these barriers are differently
experienced by African Americans. Given the nascence of clinical applications of genomic medicine and the
popularity of social media, a diverse body of patients have begun to share experiences about navigating
genomic medicine on online health networks. Widespread utilization of such social media can help researchers
access populations who have been difficult to recruit for research, and thus to provide a more robust and
diverse sample for understanding barriers experienced by underserved populations. Furthermore, targeted
interventions spearheaded by these online health networks could be used in clinical care to help interested
patients. To our knowledge, only one study has investigated patients' social media discussions of genomic
medicine and this study did not examine patient reported barriers. Our project would be the first to tap this
dataset to identify systemic barriers that we suspect have been overlooked and which have a greater effect on
African Americans.
Goal. Our goal is to build a more holistic understanding of the multi-level barriers that patients, especially
African Americans, experience when attempting to receive genomic medicine. Subsequently, we will conduct a
pilot intervention to assess whether online health networks might have the potential to mitigate some of these
barriers.
Methods. To advance the implementation of genomic medicine in clinical care, we will examine organic
conversations about patient-reported barriers on an online health network and investigate the extent to which
these barriers differ for African Americans. We will then test an intervention that addresses patient-reported
barriers through a Virtual Advisory Board (VAB) with a genetic counselor who will answer patient questions.

## Key facts

- **NIH application ID:** 10469319
- **Project number:** 5R21HG011802-02
- **Recipient organization:** BOSTON CHILDREN'S HOSPITAL
- **Principal Investigator:** Catherine Astrid Brownstein
- **Activity code:** R21 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $292,975
- **Award type:** 5
- **Project period:** 2021-08-13 → 2025-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10469319

## Citation

> US National Institutes of Health, RePORTER application 10469319, Navigating Online Patient Experiences of Genomic Medicine: Identifying and Overcoming Obstacles for African American Communities (5R21HG011802-02). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10469319. Licensed CC0.

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