Ethical by Design: Engaging the Community to Co-design a Digital Health Ecosystem to Improve Overdose Prevention Efforts Among Highly Vulnerable People Who Use Drugs
Authors: Claborn Kasey R. , Creech Suzannah , Whittfield Quanisha , Parra-Cardona Ruben , Daugherty Andrea , Benzer Justin 
Published: May 2022

Introduction

The COVID-19 pandemic highlighted significant structural barriers that exacerbated health inequities among people at-risk for overdose. Digital health technologies have the potential to overcome some of these barriers; however, development of these technologies often fails to include people who use drugs and community key stakeholders in the development and dissemination process. Consequently, this may exacerbate health inequities and the digital divide among underserved, highly vulnerable people who use drugs.

Methods

The current study employed community-engaged research methods to develop and implement a digital platform to improve overdose surveillance among harm reductionists in Texas. We used a co-design process with four community advisory boards (CABs) and conducted qualitative interviews among N = 74 key stakeholders (n = 24 people who use drugs; n = 20 first responders, n = 20 harm reductionists, n = 10 overdose prevention and response experts) to inform initial design and development.

Results

Several key themes emerged through the qualitative data pertaining to technical features and human factors applications. In regards to technical features, participants highlighted the importance of developing a unified system of overdose reporting and data sharing among community organizations within a county or region to better inform overdose surveillance and community outreach efforts. This system should include flexible data entry methods, have offline usage capability, be user friendly, and allow for tracking of overdose-related supply distribution. Key human factor themes included the need to use person-centered language, to preserve the established trust of the community organizations among people who use drugs, to be tailored to specific target user groups (e.g., harm reduction workers, people who use drugs, first responders), and maintain transparency of data usage. Further, participants noted the importance of developing a platform that will facilitate client conversations about overdose when doing outreach in the field. These themes were reviewed by our CABs, academic, and industry partners to design an overdose digital platform uniquely tailored to community-based organizations providing harm reduction and overdose response efforts.

Discussion

Community engagement throughout the development process is critical toward developing digital health tools for underserved people who use drugs. Dismantling the power structure among academic and industry partners is critical toward creating equity in engagement of community-based partners, particularly among persons with lived experience in addiction, a history of incarceration, or financial challenges. Our study highlights a multisectoral co-design process across community-academic-industry partners to develop a digital health tool tailored to the unique needs of community-based harm reduction organizations serving highly vulnerable people who use drugs. These partnerships are essential toward creating impact and reducing health disparities among highly vulnerable people who use drugs.