Health data stewardship: Learning from use-cases

29/09/2021

Written by Soujanya Sridharan, Siddharth Manohar, and Astha Kapoor

Systematic and timely sharing of health data promises to provide multifarious benefits: from improving diagnoses and treatment management to reducing costs and accelerating drug production. However, data sharing in healthcare is hindered by challenges relating to availability and quality of data, lack of unified protocols and standards for data storage, as also patients’ concerns about trust, privacy, and misuse of information. This paper examines the failures of existing mechanisms for data sharing within healthcare and attempts to make a case for data stewardship – an emerging paradigm for data governance that affords varying degrees of security and consent controls to patients, providers, and caregivers, foregrounding accountability, community control, and user agency as the guiding imperatives for health data sharing.

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