Ethically Sharing Data

Problem: Sharing data (at the individual or at the population level) from health research is a key enabler for strong health-sciences research. Doing so ethically, under the constraints of the data-collection protocols and in a way that does not impact participants, is a big technical challenge.

Solution: We propose a platform where data owners may deposit meta-data describing their data collections, associated with references to publications reporting on the findings of the study analyzing this data. The platform will help interested parties browse and discover relevant data sets and publications and to request data relevant to them. Requests will be served by associated data repositories, mediated by blockchain-supported smart contracts. Through these smart contracts the data owners will be able to operationalize the sharing constraints specified in their study protocols and the system will be able to audit all activities.

Impact: Such platforms are already being developed for biomedical research dealing with biological samples or images. Studies in senior’s health tend to collect multimodal data, including demographic data, clinical data, imaging and lab data, as well as other qualitative and quantitative data. Enabling the sharing of this data will accelerate the research productivity, will advance the impact of the research, and will increase its impact to practice and policy.

Blockchain for an ethical health data marketplace.

Problem: Sharing data (at the individual or at the population level) from health research is a key enabler for strong health-sciences research. Doing so ethically, under the constraints of the data-collection protocols and in a way that does not impact participants, is a big technical challenge.

Solution: We propose a platform where data owners may deposit meta-data describing their data collections, associated with references to publications reporting on the findings of the study analyzing this data. The platform will help interested parties browse and discover relevant data sets and publications and to request data relevant to them. Requests will be served by associated data repositories, mediated by blockchain-supported smart contracts. Through these smart contracts the data owners will be able to operationalize the sharing constraints specified in their study protocols and the system will be able to audit all activities.

Impact: Such platforms are already being developed for biomedical research dealing with biological samples or images. Studies in senior’s health tend to collect multimodal data, including demographic data, clinical data, imaging and lab data, as well as other qualitative and quantitative data. Enabling the sharing of this data will accelerate the research productivity, will advance the impact of the research, and will increase its impact to practice and policy.