UC Berkeley

Introduction

Digital health, the use of apps, text-messaging, and online interventions, can revolutionize healthcare and make care more equitable. Currently, digital health interventions are often not designed for those who could benefit most and may have unintended consequences. In this paper, we explain how privacy vulnerabilities and power imbalances, including racism and sexism, continue to influence health app design and research. We provide guidelines for researchers to design, report and evaluate digital health studies to maximize social justice in health.

Methods

From September 2020 to April 2021, we held five discussion and brainstorming sessions with researchers, students, and community partners to develop the guide and the key questions. We additionally conducted an informal literature review, invited experts to review our guide, and identified examples from our own digital health study and other studies.

Results

We identified five overarching topics with key questions and subquestions to guide researchers in designing or evaluating a digital health research study. The overarching topics are: 1. Equitable distribution; 2. Equitable design; 3. Privacy and data return; 4. Stereotype and bias; 5. Structural racism.

Conclusion

We provide a guide with five key topics and questions for social justice digital health research. Encouraging researchers and practitioners to ask these questions will help to spark a transformation in digital health toward more equitable and ethical research. Future work needs to determine if the quality of studies can improve when researchers use this guide.