“Digital benefit sharing” for non-communicable disease risk factor surveillance in low–and middle-income countries: implications for digital health governance

Abstract

Given the growing global burden of non-communicable diseases (NCDs) alongside the widespread use of mobile phones, efforts have emerged to collect NCD risk factor surveillance data in low- and middle-income countries using mobile phones, increasingly so with the involvement of “outside” commercial actors. In this paper, we consider multiple potential ways to realize and support the distribution of benefits, traditional and non-traditional, from such digital public health surveillance activities, acknowledging the need for careful considerations of likely implementation risks and challenges. We put forward the concept of “digital benefit sharing”: the provision of resources or services of value commensurate with the digital data contributed or collected from mobile phone users, in recognition of their contribution to the advancement of public health. These benefits can be directed towards individuals and the communities, professionals, and governments where the data collection activity occurred. We ground digital benefit sharing in global health justice, as it makes visible the obligations of data collectors and commercial actors towards data contributors. We also consider financial, logistical, data privacy, and data quality-related challenges associated with digital benefit sharing and call for additional governance and stakeholder engagement to facilitate a transition from concept to practice.