Article 21 Trust collaborated with several civil society organisations to put together and participate in a Roundtable on Rights Digitisation on 27th April, 2022. Particularly, we helped organise a discussion on Health Digitisation and the concerns of exclusion and surveillance that arise from the same.
Health digitisation is happening in private health care delivery, but if this data is pooled for public health research, there are apprehensions of bias and exclusion in the data coverage. This will only reflect that data of those who will be able to afford the private health care and will therefore not reflect the correct concerns for the preparation of health policy. Another concern is that insurance companies are using our digital data to sell their insurance packages at a higher premium. They are doing this as they have access to the huge expanse of data than they actually require. Similar is the case of pharma companies. In absence of the data protection framework, the privacy of the individual is at risk.
People at the grass root level, at villages need to be well informed and they need to be literate before being imposed with any technological application that might rob them off from their privacy and data. There is a need for a health technology assessment before the technological solution is launched. Impacts on the public health, privacy, ethics equity are to be assessed before the launch of any technology based health programme. There is also a need for a separate digital health regulator who can oversee the implementations, experiments etc.
Another problem that has been encountered with the technology in the health and welfare sector is the inadequate infrastructure. The Anganwadi workers were mandated to use Poshan tracker app to feed the daily data on the government dashboard for the distribution of the nutrition. Now, women and children can only get their benefits through Aadhaar card seeding. But there have been instances where the children and women were deprived of the sustenance due to the server issues. Anganwadi Workers have been against the Poshan tracker app and they know it well that this is a system of surveillance.
The notes from the discussion meeting can be found here.