Industry experts say that while healthcare delivery has been a major focus for the government, not enough effort has been made towards generating healthcare data. The NDHM has great potential to change that
India’s ambitious national digital health ecosystem is all set to roll with pilots starting in some parts of the country. The National Digital Health Mission (NDHM) will give every Indian citizen (voluntary participation) a unique health ID, control over their health data, digital personal health records, and a registry of doctors as well as health facilities.
The Centre has already come out with a draft policy on health data management and put it up for public review. It focuses on necessary data privacy measures that need to be put in place in order to safeguard the confidentiality of sensitive health information of citizens. Data collected across the National Digital Health Ecosystem (NDHE) will be stored at the central, state or the union territory level and at the health facility level. It will adopt the principle of minimality at each point, according to the document.
Industry experts say that while healthcare delivery has been a major focus for the government, not enough effort has been made towards generating healthcare data. The NDHM has great potential to change that.
The aim is to have a single database of health information that is also portable among the different healthcare service providers across the country. Such a huge volume of real-time clinical data can prove extremely useful when managing pandemics or undertaking biomedical research. For ordinary Indians, it can also ensure better health outcomes because the data collected will help doctors match patient needs.
“We assume that if an anti-diabetic medicine has been effective on a 6 feet 2 inch Caucasian male with a predominantly meat diet, it will be equally effective on a 5 feet two inch rice-eating person who lives on the east coast of India...This scheme will be an important step in analysing and making our own data set in the long run,” said Dr Shuchin Bajaj, founder and director, Ujala Cygnus Healthcare.
Pilots have started in government hospitals in Ladakh, Chandigarh, Puducherry, the Andamans, Lakshadweep, Dadra and Nagar Haveli where doctors are working on enrolling both patients and doctors. Public health experts say that these smallish pilots will help to uncover any teething issues the scheme may face.
But one fact is already evident: data entry and data management, apart from data security, will play a pivotal role in NDHM’s success and for this extra manpower is vital.
Dileep Mavlankar, director, Indian Institute of Public Health, said it is not practical to have doctors and nurses entering patient data into the system. "It is a common problem in India where, for example, an ICU nurse is expected to do the clerical job of data entry for patients daily. One needs to have proper data entry personnel to ensure this scheme is a success," said Mavlankar. He estimates that a few hundred thousand people will be needed for the job.
India does not have a model where, as in some western countries, the family doctor's office maintains patient records and refers patients to a specialist doctor when needed. In Germany, the family doctor’s practice (Hausarztpraxis) is usually the first port of call for any citizen. When this kind of infrastructure is already in place, it is easier to implement a programme of the scale of NDHM.
Industry insiders also feel that while data management will be relatively easier prospectively, the challenge lies in the retrospective data collection.
“Retrospective data entry and management is a challenge. However, prospectively, this will make things easier for telemedicine. The biggest challenge for telemedicine is to upload health records physically, especially for someone living in villages,” said Vikram Thaploo, CEO, Apollo Telehealth.
Thaploo felt will create the need before smaller healthcare service providers in the hinterland to upgrade their digital infra. Having all hospitals on the same technology platform so that they can all talk to one another seamlessly will be challenge, though. Joy Chakraborty, Hinduja Hospital chief operating officer and chairman (healthcare) at the Confederation of Indian Industry, Western Region said: "Adequate manpower training, especially for the smaller establishments, and handholding so that they are able to understand and process the data, will be needed." The fundamental blocks that comprise NDHM are: a unique health ID (modelled around an UPI id), Personal Health Records, DigiDoctor (a database of doctors), a health facility registry, e-pharmacy, and telemedicine.
The central agency responsible for the design and implementation of the NDHM (one of Prime Minister Narendra Modi’s key schemes) is the National Health Authority which also handled the Ayushman Bharat Pradhan Mantri Jan Aarogya Yojana. Will the digital divide be a spoiler? In a recent interview to a television channel, Nandan Nilekani, the man behind the ubiquitous Aadhaar project, conceded that this was something to worry about; but felt that the NDHM did not require everyone to have a mobile device in their hands. Nilekani felt that the crucial requirement was public access to digital records. However, experts feel that the government needs to clearly define the objectives of the NDHM in order to get off to a good start.
“There should be extensive consultations, planning, and debate before execution. Your main assets are the healthcare professionals. You need to reach out to them instead of just a few eminent clinicians,” said Dr Satyanaryana Mysore, head of the Department of Interventional Pulmonology, Manipal Hospitals.
He also said that the private sector needs to align itself with the government if the mission is to succeed. The electronic medical register or the EMR in the US, added Mysore, has become the bane of healthcare. Patients often complain that doctors do not even make eye contact or examine patients but simply follow a screen prompting them to ask a series of pre-decided questions with no relation to their condition.
Dr Mysore warned that if the government decides to bring in an exhaustive EMR as a part of the digital health mission, patient care is further doomed.
Another aspect that merits debate is how much freedom or leeway is given to patients under the scheme. Some countries such as Australia, according to experts, give too much control to patients, allowing them to decide the health information they are prepared to share. “If an HIV positive patient decides not to give that information, then it puts others at risk….therefore this needs to be implemented carefully,” said Dr Mysore. If all the data that will be collected had been available before the Covid-19 pandemic, it would have helped doctors and public health experts understand the evolution of coronavirus better.