The Independence Day address of the Prime Minister launching the National Digital Health Mission (NDHM) during an unprecedented novel coronavirus pandemic crisis, caught everyone’s attention. Yet, despite all his eloquence it was not clear to many what to expect in substantial terms. ‘Going Digital’ has no doubt been a magic phrase that has often been repeated in multiple contexts in the country, and as yet another ‘Mission’ for the health sector, they waited for more news to emerge. On August 27 we learnt that the Ministry of Health was expecting feedback and public comments on the draft by September 3. Since then the date has been extended by another week. Even that leaves insufficient time for discussions among medical practitioners, hospital managements, associations of various stakeholders in the health-care sector and other members of civil society for any meaningful feedback.
Some progress
There is no disputing the premise that capturing data relating to patients and its digitising could help patients, the doctors who attend to them and the health-care facilities where they seek treatment. In fact many States have already achieved some breakthroughs in these areas with the National Rural Health Mission (NRHM) and, subsequently, National Health Mission through the IT network connected to most public health centres even in tribal areas. Personal health data are generated by name till the primary health centre -level but not transmitted to higher levels except aggregated numerical data. Some patients get referred to standalone specialists or tertiary hospitals or diagnostic facilities and then they go back to their original practitioner or health centre. They carry back with them hard copies of the reports or soft copies on their smartphones. Most practitioners, especially specialists without data entry staff, often extract only the relevant notes and return the hard copies. All larger health facilities generate and store computerised patient data also for planning treatment, procurement of medicines and consumables.
Most patients avail medical services from doctors or health-care centres in their own State. But when they seek advanced care in other States or migrate to another State have they not been deprived of medical care? Was it then for want of past records or for want of a national network? Or, for want of a national policy on the issue? Ironically, many tertiary hospitals and medical colleges care little for diagnostic reports from peripheral centres or even the prescriptions of previous doctors. So what happens to all the cards created under the Rashtriya Swasthya Bima Yojana and the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana? Currently, for pan-India portability or for determining insurance cover, these cards were good enough without the need for the entire medical history at any centralised platform.
Without pretending that all is hunky dory now, one can still ask this: “Is there a serious problem with the way patient-related information is managed today?” Health is under the State-list subject. So did any State government ask for a national-level digitisation plan to help it in its tasks? Has there been a problem of not getting real-time State-wise aggregated data to the government of India? Have any associations of doctors or civil society organisations asked for digitisation?
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Let us not brush aside the benefits from a plan of virtually Aadhaar-like proportions to digitise all data relating to all patients available not just with government and private hospitals but also with diagnostic centres, laboratories and individual practitioners of all systems of medicine.
The contours
The elegance of that proposed ‘architecture’ can send anyone into a daze. An IT consulting firm has been engaged to build a National Health Stack and a registry of over eight lakh doctors, 10 lakh pharmacists and over 60,000 hospitals is under preparation. At a later stage, online pharmacies, insurance companies and other stakeholders will be added to the ‘Stack’. The Strategy Document states upfront that ‘Your data is safe and confidential and would be stored only locally’, ‘Only anonymised data will be shared upwards, and your consent will be taken every time for sharing any personal identifiable information’.
Among the many benefits listed are that it ‘would help patients save the burden of carrying medical reports to a specialist or other hospitals’. One can also avail Telemedicine support from renowned specialists if required . And it will be a cakewalk to get your hospital bills settled with insurance cover under government schemes or the higher value policies purchased by you. Overall, the scheme appears to promise an end-to-end, hands-free Digital experience.
The scheme also intends to replace existing data generation systems with a new homogenised software for all machines in the health sector in the country with a central processor that will extract the relevant data from individual records. There is a presumption that all the data entered in each patient’s file is accurate. Even entries made for Aadhaar Cards or Voter ID cards have not been error free. With all medical history recorded as ‘truth’ in the new software, insurance companies would be looking for multiple ways to reduce their obligations leading to many disputes.
Extensive costs, dilemmas
On the face of it, from the side of health-care institutions, the NDHM is merely ensuring customisation of a new software and changes in current practices of data maintenance. However, it would become inevitable for all institutions in the government as well as private sector to upgrade their hardware too apart from considerable costs in customisation and transfer of existing data. In the government sector there are many existing practices and systems for compilation of data as in the Integrated Disease Surveillance Programme and the Health Management Information System (IDSP-HMIS) apart from all learning acquired over the years by staff in those systems and practices. Some larger hospitals have already gone for robust and sophisticated software systems such as enterprise resource planning and would be in a dilemma as to whether they need to scrap them or run parallel software provided by the NDHM. Has anyone in the NDHM or the Ministry of Health attempted to estimate the costs of this massive transition to a new system? Public health professionals estimate the cost in thousands of crores for all government and private HIPs to upgrade their hardware and connectivity systems, training of present staff, the entry of data afresh apart from other indirect costs.
Among independent practitioners in allopathic and the Indian systems of medicine who run small dispensaries especially in rural areas, there is no practice of even storing patient data on computers. It is largely based on mutual trust and personal memory. For most of them, it is not a feasible option to enter data in computers on their own or engage data entry operators merely to comply with the digitisation protocols.
Data leakage
How long would the system protect its data of many millions getting stored in the decentralised system holding transferable data? Informed consent may mean nothing to a patient or relatives even in normal times let alone in a time of medical emergency. Even highly educated and rational people agree to part with their contacts, photographs and other data to avail nominal or momentary benefits offered by some smart mobile apps. Informed consent is too much of a luxury for the vulnerable and a poor defence against data leakage.
Public health practitioners at the grass-root level would continue to wonder if digitisation is the immediate problem facing the health sector or the best way to go about addressing data gaps. In their eyes, what millions face in the country are unreliable health-care facilities in both the government and private sectors, difficulties in getting timely care, availability of beds and hygienically maintained hospital premises, availability of doctors physically or on line, and the continuous neglect of preventive and community health initiatives. If they oppose a new plan, it could either be because of its doubtful benefits to patients or because of worries regarding data leakage. They may be blamed for trying to delay the inevitable; the inexorable march to digitisation. Perhaps they need to discover that data is the only cure, for all our ills.
P. Joy Oommen is a retired civil servant who served as Chief Secretary to the Government of Chhattisgarh. Dr. K.R. Antony is a paediatrician and a public health professional who served UNICEF and the State Health Resource Centre, Chhattisgarh
Source: The Hindu
