Digitization of health records and medical records brings forth the promise of convenience, better delivery of healthcare and more modern technology infrastructure. Creating digital data stores also includes the generation and issuance of digital identifiers to the patients. Empowering the patient while exploring the topic of data governance, reuse, exchange, and security are a few of the critical aspects to discuss.
Reading "Private and Controversial: When Public Health and Privacy Meet in India"
Smriti Parsheera has edited a collection of essays from experts on the topic of health records and privacy. At a time when extensive digitization of health services is underway, there is a need to have a grasp of the critical topics in the domain. This should be followed by discussions navigating the issues arising from managing and governance health records and medical information.
“Private and Controversial: When Public Health and Privacy Meet in India” uses four aspects to examine this topic. There is an overview of the current state of the legal framework; a walkthrough of the public health machinery leads to a more extensive examination of the concept of public health and governance of health data. The collection is a concise introduction with a good set of notes and references, which enable a reader to get a sense of the issues with the digitisation of health records and medical records as well as pause to examine some of the emerging trends critically.
A constant narrative with creating digital records is the concept of “economic value”. Experts have produced many opinions on unlocking value - but these are primarily economic and opportunity-based. The medical diagnostics and research aspects of data collection, aggregation, anonymisation and retention are usually dealt with in a more technical part and lead to topics around data ownership, control, consent, sharing and eventually, data quality. The review of the three government schemes (NTEP, JSY and PM-JAY) surfaces some critical issues that need to be considered. At the same time, health services become intrinsically offered through the Unified Health Interface (UHI).
The essays around data governance do not explore the concept of “responsible usage of data” in detail. And this is a pity because emerging trends using assistive and algorithmic approaches need large volumes of data to be trained to produce satisfactory results. It is necessary to have these topics discussed extensively before they become normalized, with all the unintended consequences being baked into product designs available to end-consumers and patients. The other aspect which is absent is the data format - how data quality is affected by having authenticated and verifiable data streams, which empower patients with more control and agency around the disclosure and sharing of data. Some of these ideas are explored in another recent book, “Digital Health and Patient Data”
Several models are emerging around health data exchange, marketplaces and the regulatory technology around health data governance. And as both public services and private enterprises create innovative approaches in this space, it is necessary to continuously examine the creation of digital identifiers and whether extensive cross-linkage leads to pervasive surveillance. Join us at Hasgeek as we engage in these conversations.