In a recent update it has reveled that Ministry of Health and Family Welfare released the Draft Health Data Management Policy – an important part of the National Digital Health Mission – for public consultation in August 2020. The vulnerability of citizen health data is directly tied to the various incentives that third parties have to gain access to an individual’s data. In today’s times, a variety of individuals’ private data is being com modified, ranging from financial data to health, education and consumption patterns, among st others.
As an individual, our first layer of privacy is at a family level. Considering the traditional manner in which family structures in India function, the health data of an individual is often de facto made accessible to older members of the family. This becomes especially relevant in some sections of the population, where there is a social stigma attached to certain diseases or medical procedures. Hence, the ramifications of having an abortion, a mental illness, or a disease like HIV/AIDS can leave the individual whose confidentiality has been breached in a vulnerable position. This breach in privacy often translates to the affected individual facing judgement and discrimination, both within the family as well as at a societal level.
On a broader level, current and potential future employers have a vested interest in the health data of an individual, as it helps govern important business decisions such as whether to offer an individual a job or a promotion. In such a scenario, health concerns such as heart disease, mental illness and other factors have the potential to be considered proxies for workload management and an ability to excel in stressful situations.
It has also sped up the transition to a relatively data-heavy approach to healthcare, with a significant shift towards telemedicine services, as well as the increasing prevalence of contact tracing apps such as Aarogya Setu. This has further exacerbated the structural vulnerabilities of the current framework governing the storage and transfer of citizen health data.
Apart from social stigma faced at a family level, individuals’ health records and associated personal information being made privy to employers can lead to discriminatory practices at the workplace as well. A Harvard Business School study from earlier this year discussed the rising trend of employee wellness programmes and their invasive nature. They examine how data in this context is unregulated and can be used as a conduit for worker surveillance as employers access a wealth of employees’ personal information and non-anonymised health data.
The cases discussed above are just a fraction of the variety of ways in which our health data can be exploited. There must be a shift in the manner in which Indians think about the privacy of our health data, be it at the social, professional or government level. The risk to the privacy of citizen health data is very real and hence, it is imperative for us to work towards creating a secure framework for storing and transferring this data. The Draft Health Data Management Policy is meant to do just that and it is important for citizens to actively engage with this policy considering how it is going to govern an extremely important.
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