Health Records and Data Privacy

Health Records and Data Privacy

Understanding concerns and harms of Digital Health Records

The COVID-19 pandemic had been a pivotal moment in the roll-out of a number of initiatives around digitalization of health data. And as health data is made more context rich with additional digital identifiers being linked to it - the correlated health records are projected to streamline the delivery of healthcare and reduce the friction in the availability of health coverage. However, in absence of a robust data protection regime, this explosive growth in digital health records creates a number of concerns around the topics of data governance, data privacy and data security.

At the Health Records and Data Privacy initiative we intend to examine all possible aspects of digital health records including tokenization of records as “data assets”. We intend to understand this digital transformation from the persona of a consumer of health services and a patient. This perspective allows us to find topics of concern which include the very awareness of the concept of privacy as well as the level of trust in the health system - both from the perspective of public health and clinical health.

The following outcomes are expected from the project:

  • Masterclasses and webinars - the masterclasses conducted by experts provide an in-depth understanding of a selected topic. These talks cover the range of themes and areas highlighted here
  • Recommendations and responses to government consultation - developed through a collaborative process these recommendations blend the knowledge of the experts along with a cross-section of privacy related concerns intended to mitigate the risk of introducing harms through technology intervention
  • Interim report - emerging from the inputs of practitioners, domain experts and the community the interim report serves to blend a review of the discussions as well as present a set of best practices around the themes covered in the project
  • Privacy By Design survey - design a survey for application developers, researchers and UX experts to gather inputs around designing of health applications and services while being mindful of Privacy By Design guidelines. The survey should lead to a set of recommendations which will be useful for future iterations.

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