Operationalizing the Use of Existing Data in Support of Biomedical Research and Innovation: An Inclusive and Sustainable Approach

Advancements in science and technology has created an expectation and demand on research and innovationInnovation to address some of the greatest societal challenges, particularly in the health and biomedical fields. There is an inherent promise associated with the potential of breakthrough technologies, particularly when combined with quality health-related data, to deliver significant improved health outcomes globally. However, science and innovation alone are not sufficient to achieve societal transformation towards global health. There is an observed reluctance to operationalize the use of existing data, mainly due to privacy and security concerns, as well as a palpable apprehension around how, for what purpose, and by whom data will be used. Research and innovationInnovation need to be supported by behavior and attitude change in order to foster inclusive participation and effective societal uptake of the resulting solutions. This chapter explores how the principles of Responsible Research and InnovationResponsible Research and Innovation (RRI) can be applied to provide a legally supported, inclusive, and sustainable approach to operationalizing the use of existing data in support of health-related innovations. By incorporating a deliberative and responsive process to citizen scienceCitizen science practices, the root causes underlying this observed reluctance can be identified and addressed. The overall aim is to gain a fundamental understanding of the real and perceived barriers to utilizing data for research and innovationInnovation purposes, which can then be used to proffer solutions to create a responsive and inclusive culture to sustainably support the ongoing responsible use of data.