To maintain participant-centric research, studies should always provide participants, guardians, and their respective point-of-care physicians with all relevant data, research findings, and recommendations. Funding institutions should move towards operationalizing data sharing by implementing robust policies. These policies should be supplemented by a roadmap of priorities and investments that incentivize researchers to use the latest technologies for collaboration and sharing. More importantly, however, the culture of data sharing must change such that it becomes prohibitively disadvantageous for any researcher to not share data. Orchestrating this culture shift can be done with the right suite of policy tools while also taking into consideration patient privacy as needed.
Idea No. 985