E-Health Records and the need for Health Surveillance

There is an international outbreak of coronavirus leading to thousands of people being kept under quarantine and watched for symptoms. In Kerala, a patient who has been a victim of coronavirus has resulted in the health ministry tracking 69 people in direct contact with the patient and in total around 1793 people are being watched. The Kerala health ministry needs to be lauded for what they are doing, but the question is can this be replicated in larger scales in remote parts of the country.

Tracking the travel and contact history of individuals will be really hard as state machinery goes thin in various parts of the country. The state over the years has developed and evolved techniques to help it aid with this task. Epidemiology as a branch evolved with the cholera outbreak in 19th century London and John Snow’s map was used to identity it was water-borne and wells in London were helping spread the disease. John Snow’s map is an important piece of history which was replicated with cholera outbreaks in other cities including calcutta to track victims and deaths.

Health surveillance and quarantine protocols are not new, the history of quarantine leads directly back to the 15th century sea explorers returning from their african and asian adventures and brought back some exotic diseases with them. This lead to the creation of public health departments across the world over the years. But with people moving so fast across the globe, disease spread has also become a major issue. If the corona virus toll indeed rise up, a global travel ban would be imminent and health surveillance becomes key.

Health surveillance in general is a very passive exercise where public health officials are monitoring the spread of disease by looks at statistics across hospitals. But during health emergencies it becomes an active form of surveillance where people are being tracked directly. This is the only form of surveillance no sane person can argue against, it is important and opposing this only invites actual harm to society. Not all forms of surveillance are bad, only the forms which are invasive and nonaccountable are the problem.

The ministry of health has been pushing for digitization of personal health records over the years and has brought the electronic health records standards in 2016. These standards enable the hospitals and government to store patients records over the years and even transfer them to other hospitals, when patient moves. The government after working on the standards is now working towards building health data repositories part of National Health Data Blueprint.

The National Health Data Blueprints recommends a variety of systems to be built to improve public health, but it also has another aim of enabling a health-tech industry. This makes the storage and sharing of health data complicated considering the private nature of health data and how it could be exploited against an individual. The proposed solution for this has been to anonymise the data and not allow anyone access without the patient’s direct approval except in case of emergencies. During emergencies, the blueprint allows the government to deanonymise the individuals personal details without consent.

The idea of deanonymization of data directly comes for active health surveillance and is indeed important during emergencies. People need to be tracked and the spread of disease cannot be allowed. These health protocols evolved over time, the use of data for this is not new and technology can indeed help. But the economic interests of capitalism without the right laws could lead to exploitation. Higher premiums because your health records says you are more prone to disease should not be allowed. This is why privacy is also critical for individuals.

The proposed data protection law penalises deanonymisation of personal data, but there is a usecase for it during emergencies. To implement this in the right way, the government needs to provide exemptions but with due checks in place. Misuse of personal data can always happen, the key is to balance public interest and personal interest. This is why laws are designed to withstand various tests, if the government intends to bull-doze certain issues without thinking them straight, it will only harm the society more. The key issue with data and technology in the hands of government is accountability. Until we don’t have accountability, no amount of technology can help us solve our problems.

(The writer is an independent researcher working on data, governance and internet. All views are the author’s own and do not necessarily reflect the