Dr Oommen John and Prof Supten Sarbadhikari discuss the potential to leverage DH tools and the opportunities for India to utilize data
The ubiquitous mobile phone caller tune has been one of the biggest Digital Health (DH) interventions being used for COVID19 response in India. Anything that is related to ICT is classified under digital health. India is one of the first countries in the whole world that had implemented primary live telecommunication based information dissemination campaign and perhaps the largest of its size in the world.
Even before the pandemic hit the country, the caller tune was introduced sensitizing people and letting them know that there is something that is there and if you have the symptoms you need to reach out. Beginning from that there had been tremendous opportunities for implementing the digital health interventions, feels Dr Susheel John.
Analysing Digital Health Interventions Threadbare
A lot of work goes on in collating the information that is collected by frontline healthcare workers for creating the beautiful graphs that we see in each of the presentations on district level COVID cases, deaths and what level of activities are happening. All of that is digital health and there is a lot of effort that goes into it. One thing that Prof Supten Sarbadhikari would like to highlight is that we do have a fairly good infectious disease surveillance system that has been built on the backbone of the polio surveillance system. As that is fairly robust, it can be used much more. It is a good digital health intervention that even the global authorities recognise.
Both John and Sarbadhikari wholeheartedly laud the entire laboratory testing and particularly the next generation genomic sequencing that has been done primary led by IGI labs closely working with testing laboratories. “That is a tremendous contribution to the country and we have been able to tell you with very high accuracy as to what are the kind of strengths of the viruses that are going on. This helped particularly if you need to know is there a mutation that is happening, are the viruses that have been circulating different from the ones that have been imported,” assert John.
Digital Health as an Enabler
This has severe implications in terms of the vaccine that would be introduced and placed. “How do you who established re infection? You need to have a genetic baseline and then you have to map it against with new genomic sequence. All of this requires huge digital infrastructure. We might not consider all of this is a digital health because it’s not a shiny app as our popular understanding of digital health. But all of these infrastructure in the back-end is collating data interfacing with the next generation sequencing machines and looking at data in real time is all digital health,” Sarbadhikari is vocal about that.
Then there have been specific interventions in the area of chatbots, and conversational AI implementations that have happened in several States. Sarbadhikari wants to bring to our attention the role that the startup companies have played in this. “We have had multiple companies come up and they established call centres, missed call services and even home based monitoring applications. One thing I would like to highlight was the digital infrastructure or digital intervention that was introduced needs to closely communicate with the health systems so that the response can be optimised.”
“We have multiple contact tracing apps in our country. We had done a systematic review of the apps early in the pandemic and one thing that we noticed is that there is a lot of duplication of these activities particularly in terms of the contact tracing app and if they were synergistic, if they were pulling data and were able to in real time give the information into the health information system of the country. You need to also have adaptive algorithms,” laments John. That is why the power of digital health comes in. It is a connector but you need to have a huge infrastructure that is functional and ready to service when this triggers, then the digital health intervention can happen.
NDHM and the Data Conundrum
Real time data is really valuable in a pandemic. Many countries have really changed course accordingly in between acting on the insights from this data. You cannot have one size fits all and for that data is very important. Real time data is invaluable. Add to that the mechanism for leveraging digital tools and we can easily track the corona scenario.
Today, we completely do not know what is happening to people who are recovering from COVID. They could be silently suffering, many of them are coming back with cardiac events, stroke and these are all anecdotal. But if you have a system in place where we track and we know what is the percentage of people who are getting a stroke after having gone through COVID admission or a COVID diagnosis, it could help immensely in our preparation.
Till we have hard data we will never be able to know what is it providing this protective effect and what is the age and gender distribution of this people who are protected. Anecdotally we hear that people who are in the younger age groups are not that badly affected but then we also hear reports of a 30 year old having a stroke. “Here I want to bring the value of having longitudinal health records that is electronic,” argues John.
India had introduced electronic health records standards in 2016 and there was some effort by every player in the private sector, public sector and the government. We have even the slightest of the rudimentary electronic form of a health record. If we have a basic clinical summary of our people and then we are able to add on to that COVID diagnosis and then follow the map over a period of time, we could have been in a much better position. If you do not have any way of going back and checking all that how will you evaluate any of this hypothesis. And hence data is very important.
Many people tend to think there is a huge demand and supply gap. We do not have enough number of beds or enough number of doctors and Healthcare professionals in our country as compared to the WHO standards. “If I build a digital infrastructure by which I connect this to the system, I can overcome the problem. Theoretically that is very much possible,” asserts Sarbadhikari.
We need to understand that if for example we are connecting somebody to an app or through telemedicine there would be a very small percentage of cases who need an immediate intervention and therein comes ethical responsibility. It is not just the connector that connects between entities, but we need to make sure that the whole of the ecosystem is there. Therefore, digital health is an enabler. Whoever would disrupt Healthcare digitally would be the one to who would be able to connect these dots also connect at the last mile with service delivery.
I will look at data from a utility point of view and from a person point of view. When I as a person am contributing data, I should have every right to know how that data is being used. Even if you remove all of my personal identifiers from me, smart algorithms can triangulate all of that. The line of personal data and non personal data is a very frivolous one. The important thing that we need to understand is that many people in our country do not understand what the value of data is. We need to have a comprehensive data related policy that covers all citizens and protects the interests of the citizens.
It is like a two-edged sword, on one side data can kill you and the other side data can save you as well. How we balance is two edged sword for the benefit and overall improving outcomes while preventing misuse is a trick that need to be played very carefully. Governments are empowered to do that and it is the mandate of the government to protect the rights of the citizen.
Therefore I think that there need to be a comprehensive single language policy right across different systems. You cannot have contradictory health related data protection and slightly variant finance related, because then the people who are in the fintech world can recreate all of this data and create my financial twin and can infer a lot of my health related indicators from their financial transactional data, warns Sarbadhikari.
Opportunities for India
WHO itself has constituted digital health and innovation ethics separate. One of the biggest challenges about many of the tools is that people who are otherwise secluded and were marginalized from the society are the ones who are likely to be not represented. John illustrates with an example. “Look at what is happening in COVID in education. Many of us have the fortunate capability to afford to be able to give our children tools to be able to do online schooling. There are people who are living in communities where they cannot afford it,” he explains.
One of the ethical aspects is exclusion or how do we include everyone. The other aspect is the algorithm biases. Quite often algorithms are built on representative population. Gallery information asymmetric also exists in Healthcare delivery. Some people have more information and some others do not and often in between the platform starts playing upon this information asymmetric.
If for example, we are not able to deliver health services to the brick and mortar you need to have alternate mechanism. That has already been proven that alternate mechanism will emerge and it is to be exploited. This pandemic has been shown that you can do a lot of stuff that you were not doing before because of the leverage that the digital tools provide, Sarbadhikari sounds convinced.
You just cannot have an app and say that here is the solution that will manage diabetes. It needs to connect all the dots and whoever is developing the solution need to work very closely with the patients because at the end of the day compliance and utility of any of these interventions are dependent on the user engagement and how they use it. We need to understand how their work flow in a day is like and then tailor our applications and our interventions accordingly.
To sum it up, we have to look at how have some countries have done immensely well in spite of the fact that they had the pandemic very early. They did so because they were able to use real time data to act. If we have mechanism by which we can have real time data of this particular pandemic, we need to leverage the fact that we need to build our front line Health service delivery. We need to improve our screenings better as we have excellent NCB screening program in the country which is digital again. We can scale it up, integrate the data and use it for influencing as well as protective interventions. If at all there is something that we learn is the power of the data and the need for high quality clinical data. You have clinical data there is so much one can do to improve the outcomes.
You need to make sure the data is kept as secure as possible and the privacy of every individual and every citizen is kept in consideration. While doing that let’s empower our citizen to make better decisions and let us give the power of digital into their hands. This is an opportunity not to be missed. Let all of us come together and work towards improving health outcomes. Our larger objective should be how to improve the health of our nation. In our country we have approximately 30 million birth per hour. If we were to know the birth rate of the 30 million and intervene early we would have improved their IQ by several fold through early interventions.