JMIR Publications

ABSTRACT

Digital tools and strategies, including social network platforms and wearable sensors, offer unique opportunities for health research. For example, Twitter posts can support public health surveillance to identify outbreaks (e.g., influenza, COVID-19), and a wearable fitness tracker can provide real-time behavioral prompts and passive data collection to support health interventions. With these opportunities comes the responsibility to consider the potential risks and benefits to research participants when using health technologies. Researchers can and should be involved in the risk assessment process, as many tools in the marketplace may not have consistent standards with respect to, for example, privacy and data management. In the US, little guidance exists to assist researchers and institutional review boards in their evaluation of digital health research with respect to participant protections. To address this gap, the Digital Health Checklist for Researchers (DHC-R) was developed as a decision support tool. Part of the DHC-R development process involved participatory research with behavioral scientists who beta-tested the checklist by retrospectively evaluating technologies they had chosen for use in their research. This paper describes the lessons learned as a result of their involvement in the beta testing process and concludes with recommendations for how the DHC-R could be useful for a variety of digital health stakeholders. Recommendations focus on future research and policy development to support research ethics, including development of best practices to advance safe and responsible digital health research.