Rebooting consent in the digital age: a governance framework for health data exchange
| Autor: | Nivedita Saksena, Anant Bhan, Rahul Matthan, Satchit Balsari |
|---|---|
| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
Medicine (General)
Privacy by Design media_common.quotation_subject Internet privacy India Population health Infectious and parasitic diseases RC109-216 03 medical and health sciences Fiduciary 0302 clinical medicine R5-920 Humans 030212 general & internal medicine Ecosystem media_common Social Responsibility Informed Consent business.industry Corporate governance Jurisprudence public health Public Health Environmental and Occupational Health health policy Digital health United States Privacy Accountability Business 030217 neurology & neurosurgery Autonomy Analysis |
| Zdroj: | BMJ Global Health, Vol 6, Iss Suppl 5 (2021) BMJ Global Health |
| ISSN: | 2059-7908 |
| Popis: | In August 2020, India announced its vision for the National Digital Health Mission (NDHM), a federated national digital health exchange where digitised data generated by healthcare providers will be exported via application programme interfaces to the patient’s electronic personal health record. The NDHM architecture is initially expected to be a claims platform for the national health insurance programme ‘Ayushman Bharat’ that serves 500 million people. Such large-scale digitisation and mobility of health data will have significant ramifications on care delivery, population health planning, as well as on the rights and privacy of individuals. Traditional mechanisms that seek to protect individual autonomy through patient consent will be inadequate in a digitised ecosystem where processed data can travel near instantaneously across various nodes in the system and be combined, aggregated, or even re-identified.In this paper we explore the limitations of ‘informed’ consent that is sought either when data are collected or when they are ported across the system. We examine the merits and limitations of proposed alternatives like the fiduciary framework that imposes accountability on those that use the data; privacy by design principles that rely on technological safeguards against abuse; or regulations. Our recommendations combine complementary approaches in light of the evolving jurisprudence in India and provide a generalisable framework for health data exchange that balances individual rights with advances in data science. |
| Databáze: | OpenAIRE |
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