But they point out that Niti Aayog’s proposed National Health Stack must ensure data privacy and patient consent.
Niti Aayog’s proposal to create a cloud-based platform to store and share the health data of Indians has raised alarm among health and digital rights activists, but medical technology companies have welcomed it.
Called the National Health Stack, the platform will facilitate the flow of information between multiple stakeholders – patients, doctors, national health programmes, insurance companies, medical researchers, health technology companies. In the document outlining the proposal, Niti Aayog has argued that this will improve access and affordability of healthcare and boost medical research.
Medical technology companies are optimistic about the plan. “The National Health Stack approach looks at technology as an integral part of healthcare delivery,” said Prasad Kompalli, chief executive officer and co-founder of mfine, a company that has built a mobile application to connect doctors and patients. The app is powered by an artificial intelligence system to create “virtual hospitals”, that is, the app does not simply connect doctors and patients but also collects, structures and analyses the patient’s medical data to help the doctor diagnose and treat the patient.
According to the Niti Aayog proposal, the National Health Stack will be based on a system of open application programme interfaces to transfer information, with a national health ID that is possibly linked to the biometrics-based identity system Aadhaar. As reported by Scroll.in on July 12, digital rights activists have pointed out the dangers of having sensitive medical information stored and shared on an open application programme interface system. Although the document states that the patient will own and control his data, it is unclear who will own and control the health stack. The system is based on India Stack, a cloud-based set of open application programme interface systems for digital payments, over which there have been questions of private companies’ access to both public resources and citizens’ Aadhaar data. Moreover, there is uncertainty over how the National Health Stack will be able to ensure confidentiality of patient data and that any medical information is only shared with the informed consent of the patient.
However, Kompalli said as a technologist he sees infrastructure like a universal digital health ID that can be recognised across health systems in the country, a system of health record management and open application programme interfaces leading to better data standards – that is, data that is collected and recorded more accurately, is more complete and formatted uniformly to enable easier sharing. “When data quality improves, a lot of innovation is possible for diagnosis, diagnostics, long-term care, identifying root causes of patient’s problems, geographical spread of viral infections, predicting and preventing diseases based on geography and patient age groups,” he said.
India now has several medical technology companies like mfine that offer a range of services. Apart from medical device and prosthetics manufacturers, a number of companies are investing in the “Internet of Medical Things” – using the internet to offer clinical services like video consultations, remotely monitoring a patient’s vitals, artificial intelligence to control ICU devices and so on. These technologies are also used for non-clinical use such as connecting ambulances to hospital networks and to streamline hospital appointments and rescheduling. There is little documentation on the current size of this fast growing new sector.
Dr Ajay Nair, healthcare consultant and entrepreneur, said it was high time India had standards on how to store, retrieve and exchange health data, but while the Niti Aayog’s paper had a good broad outline for the platform, the devil would lie in the details, which are yet to be decided. “The question is really in the details of what are the individual’s rights, how does consent work for data sharing, who keeps the data, how long can they keep the data, who can use the data,” he said. “All those are three levels deeper in details. This is a strategy paper, and does not go there.”
Using the health stack
Nair co-founded and ran Paycillin, a digital tool for billing and payments at medical clinics, and a nationwide telemedicine network called MeraDoctor. He said a database of the National Health Stack could be a potential “gold mine” for medical research.
“We do not have a lot of data, for example, on how Indian patients react to certain kinds of medication,” he said. “We also lack treatment standards. For example, in the United Kingdom, you have the National Institute of Clinical Excellence, which publishes very well regarded treatment and cost efficacy standards for most things. We just do not have that because we do not have any better data than what the West is telling us.”
The health stack system could help gather such data, Nair said.
Kompalli believes that a company like mfine can use a platform like the National Health Stack to provide better healthcare services. Mfine connects patients to doctors over the internet through a mobile phone application. The doctor gets structured patient data through the app, which stores patient medical data. The artificial intelligence system powering the app also analyses the patient data and presents the doctor with evidence and options, before the doctor makes a final diagnosis. The artificial intelligence system also learns from the doctor’s decision and patient feedback such has how long he took to recover and what his vitals were after medication. This helps the system present a doctor with better analysis the next time there is a similar case, said Kompalli.
With a national health identifier, such as proposed under the National Health Stack, Kompalli said that mfine will be able to retrieve data more easily. “If a patient wants data to be obtained from a hospital using this ID, we should be able to do it,” he said.
Kompalli also believes that mfine can potentially serve as a health registry within the National Health Stack “by storing data and making it accessible to patients and for whatever uses the patient has authenticated”.
Moreover, all universal healthcare systems run on some kind of universal identifiers, Nair pointed out. “That being said, you need to have protections for data and you need to protect against people not being denied coverage of care [if they do not have an ID], especially emergency care, where you might also need different access rules or a waiver for consent [because the patient might not have the capacity to consent],” he added.
Privacy and consent
As an intermediary between doctor and patient and a repository of health records, mfine has had to address the question of patient privacy and their consent for sharing medical data. “How we do it is that the patient is the owner of the data,” said Kompalli. “He gives access rights every time he needs to give it to a doctor.”
Similarly, MeraDoctor had a privacy policy that gave the patients control of their data. This is easily done on these mobile apps, where the patient can give his consent before each online consultation. But as health activists have pointed out, giving patients control of their data will be significantly more difficult on a pan-India platform that reaches out to patients in urban and rural areas, with varying levels of education and who may or may not be able to use smartphones. Speaking to Scroll.inearlier, health researcher Prasanna Saligram said that the system outlined in the document “places the onus of control on the user with an assumption that they know how to control the flow of information through APIs [application programme interfaces], like a software engineer. In reality, the user is more likely to be an elderly lady with low levels of literacy who earns by selling coriander”.
The National Health Stack also proposes a system in which the patient is the owner and controller of his or her data but the question is open as to how it will implement patient control and enable their consent in an open application programme interface framework.
“The questions of privacy and consent still exist and these are not things that are impossible to solve,” said Nair. “The best safeguard to make sure that this heads in the right direction is to have as wide a public consultation as possible.”
