Platforming participatory research data governance

Research data governance is an under-explored issue, and technical infrastructures to support the transparency and control of data collected in human research studies (from medicine to social sciences) focus primarily on the researchers rather than the people whose data has been collected. While data protection legislation worldwide is increasingly regulating what companies can do with their customers' data and providing legal mechanisms for customers to access and control such data, the same cannot be said for data collected in research studies.

Numerous problems abound, including low levels of data governance literacy amongst researchers, poor internal processes in universities for tracking research projects, poor within- and post-study communication with participants, and a general culture of bad data management practices. Whilst many of the problems of research data governance are well understood, very little research has been conducted into developing new technical infrastructures to support good practice.

Such infrastructures might provide participants of research projects: (1) unfettered access to data collected from them (transparency); (2) control over whether they want their data to be used (continuous consent); (3) control over the sorts of projects and organisations for which their data can be used (contingent consent); and (4) up to date information on the outcomes of research project in which their data was used. 

This project will establish the requirements for, and develop, a new class of participatory research data governance architecture that will address the research-centric nature of current approaches. The project will implement and open-source exemplar of the architecture and demonstrate its utility in two large-scale, long-term community-focused research projects that are ongoing at Monash University Australia and Monash University Malaysia.