JMIR Publications

ABSTRACT

Digital technologies 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 data collection to assess the effectiveness of a behavior change intervention. With these opportunities comes the responsibility to consider the potential risks and benefits to research participants when using digital tools or strategies. Researchers need to be involved in the risk assessment process, as many tools in the marketplace (e.g. wellness apps, fitness sensors) are under-regulated. However, there is little guidance to assist researchers and institutional review boards in their evaluation of digital tools for research purposes. To address this gap, the Digital Health Checklist for Researchers (DHC-R) was developed as a decision support tool. A participatory research approach involving a group of behavioral scientists was used to inform the DHC-R development. These scientists 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.