Have you heard of “mHealth” or “digital medicine” or “MISST”? MISST is an acronym our research team uses to describe research that involves the use of mobile, imaging, pervasive sensing, social media, and location tracking strategies that can passively observe human behavior. MISST data collection strategies include wearable sensors and apps (also linked to terms like “mobile health” or “mHealth” and “digital medicine”) that are designed for research, and increasingly, commercial products like Fitbit or MapMyRun.
These MISST tools and strategies offer amazing potential to collect granular personal health data. However, it is critical that researchers, clinicians and regulators be aware of potential risks and management strategies so that participants, some of whom are patients, are protected from avoidable harms.
Several years ago we recognized that researchers and ethics review boards may benefit from having access to a community with MISST expertise. In response, we have built a web-based platform called the Connected and Open Research Ethics or CORE initiative.
Recently, the Journal of Medical Internet Research featured the CORE initiative. This Call to Action piece entitled “Navigating Ethics in the Digital Age: Introducing Connected and Open Research Ethics (CORE) a Tool for Researchers and Institutional Review Boards” to increase awareness of this resource and invite IRB and research stakeholders to get involved. A goal of the CORE is to collect and curate resources to assist researchers to plan ethical research and assist IRBs that are evaluating these studies.
The CORE now hosts a growing global network of over 300 individuals representing 10 countries and a majority of the United States. Network members bring expertise in privacy, technology, bioethics, research ethics, regulations, sciences, and engineering. While there are a few people who identify as participants, a goal of the CORE team is to increase involvement of people who may be or have been participants in MISST research studies. What brings these people to the CORE is a common interest in contributing to the ethical design and efficient and meaningful review of this research.