Today digital tools must, but often do not, offer dynamic consent procedures, particularly in low-resource settings where care is coordinated at the community scale.
Most informed consent practices focus narrowly on legal compliance for human subjects research - in which cases the risks and benefits of a specific study are shared with potential participants - and not on broader issues of data protection and consent to data collection. Responsible data in health care settings, including data privacy and protection, requires a more nuanced approach. Not only should consent be responsive to complex legislation and local values, but also must outline, in layman’s terms, the rapidly evolving and intricate ways health data may be shared and used. Ultimately, we believe the process must be easy for patients to understand, simple for frontline healthcare providers to support, and feasible for digital health stakeholders to implement and maintain.
At Medic, we have been grappling with questions of how to rethink informed consent by centering the CHW and their patients in the design process. Our research collaborators at UW HCDE, @Beth and others, have worked closely with members of the Medic team to think through how we might approach a translational research project to reimagine informed consent and implement workflows via the CHT.
Recently, we presented a case study publication at the CHI 2021 Conference titled “Towards Responsible Data Practices in Digital Health: A case study of an open source community’s journey” speaking to our early work in this space. We’d love to hear from members of our community about their approaches to responsible data, informed consent, and engaging in ethical forms of data science.