Angshuman Sarkar, Principal Consultant, ThoughtWorks, opines that at an individual level, India lacks patient history for most of her citizens, impeding their right to effective healthcare. At the national level, there is a profound lack of reliable health-related data for informed decision making
In one of my trips to a local public health centre, I overheard a member of the National Health Mission (NHM) staff preparing a disease profile report showing reduced instances of diabetes in her area. Thankfully, in this case, the practitioner’s good sense prevailed. While the claim itself is impossible to be true, even after accounting for migration and deaths, this report is a perfect synecdoche of India’s health reporting system.
Health information in India is sparse, anecdotal, and often unsuitable for supporting policy decisions. At its best, reporting is done mostly through disparate surveys such as National Family Health Survey (NFHS), District Level Health Survey (DLHS) and Annual Health Survey (AHS). These surveys happen in two to six year intervals, with a lag of 9-22 months in publication of the data from end of collection. As per a recent World Health Organisation (WHO) review, about 90 per cent of the questions in these surveys focus on maternal and child health, and reproductive health,1 even as India’s disease burden has significantly shifted towards non-communicable diseases.
The biggest obstacle to a standard, accurate and updated health information system is the complexity of our health services delivery. For the purpose of this article, let’s only consider the public healthcare system, which the majority of Indian population rely on. At the lowest levels are the community health centers (CHCs) and primary health centres (PHCs), augmented by sub-centers and community health workers (CHWs). Data from this level is foundational for surveillance and monitoring health events for the purpose of planning, implementing, and evaluating public health interventions.
Currently, information gathering and recording at this level is either through memory or on paper. In the rare cases where it is digitised, it is unusable at higher levels for individual patient care, because systems are not standardised, not interoperable, and unsuitable for local analysis.
At the secondary level, there are sub-divisional and district level hospitals. In this level clinical reporting is expected — enabling the timely spotting of health trends and to take appropriate corrective actions in the area. However, most hospitals don’t maintain any Electronic Health Record (EHR) and don’t share patient information with PHCs or referral hospitals, leading to repeated examination and tests adding to patients’ burden, and to the chaos of data analysis.
At the tertiary healthcare level, the problems are more complex. In the rare cases where hospitals use EHRs, they can’t refer to the information from PHCs and district hospitals. They end up being purely reliant on a patient’s description of treatment management (or repeating the diagnosis, tests and evaluations yet again).
This multi-tier disconnected structure of public health care delivery and systems make the assimilation and analysis of patient information a Herculean task.
To complete this task, and to build a universal, integrated, holistic health information system, eHealth needs to be imagined like e-Governance — with the citizen at the centre and all government services around her. Similarly, we need to build a system that works to leverage the patients’ clinical history to provide them with quality healthcare that they should be entitled to, without needing them to be the bearer of information.
Last year’s concept note by the National eHealth Authority (NeHA) outlines the basic needs and structures of a national digital health initiative.
“For building an interconnected e-Health system across public and private hospitals within a state or nationally, it is imperative that they should have consistent standards for identity management, data entry, messaging, data encryption, retrieval, reporting etc.”
On the other hand, government contribution to healthcare is little over one per cent of GDP – less than half of that spent by comparable sized economy of Brazil. We have one doctor per 1400 patients – lower than Pakistan! While the natural need is to increase spending on healthcare, any national level initiative should be affordable to remain sustainable — affordable to build, maintain, and scale, while working uninterruptedly in low-resource and moderate connectivity environments.
Our neighbour Bangladesh has made great strides in this regard. With clear foresight, and strong political will, Bangladesh has ventured to build a centralised Health Information Exchange (HIE) that assimilates data from the field and facilitates integration across levels of healthcare delivery, throughout the country. This enables seamless sharing of patient information for better continuity of care — such as mother-child care, HIV care and TB care. Systems at various levels will synchronise their catchment patient information from the HIE — allowing patient records to be readily available for reference for clinical care and local analysis. Each level becomes a hub for the lower levels.
Information will continuously be processed from the central HIE, aggregated and sent to the national reporting system, for measuring and evaluating progress on an almost real-time basis — enabling measurement of effectiveness, bringing transparency and accountability. This is currently running as a pilot programme in one district, and it is intended to scale across the country.
With universal health coverage in mind, everyone (programmes, initiatives) working in public health space is expected to integrate with the HIE. Any system being developed would need to share patient information with the national Shared Health Record (SHR), and/or share aggregated data with the national reporting system. In the long run, hope is that private healthcare providers will also see benefit and join the HIE.
In several ways, India is similar to Bangladesh — the delivery system is similar, majority of the population is dependent on the public health system, and the staff and practitioners prefer a system in their local context. Bangladesh’s model may be of relevance and provide useful insight for adaptation in India. While the scale of an integrated health information system for 1.3 billion people (Bangladesh’ population is less than that of Uttar Pradesh) is a challenge in itself, it is amplified by health being a state subject in our country.
To establish a federated yet integrated ecosystem, India may consider a hub-and-spoke model — each state having its own HIE interconnected to the national HIE. This way, the patient’s information can be accessed from wherever, whenever needed. Aadhaar can be leveraged for identification and patient consent to information sharing.
Such a journey will be tough and ongoing, and India appears to be on its path. The 2015 draft National Health Policy has raised hopes of many as it alludes to ensuring health as a fundamental right. A digital health strategy — coming together of policy and regulations, technologies and standards and of economics and of operation — will help strengthen this ambitious mission.
While introducing technology, special care needs to taken to ensure patient confidentiality and safety. Devising standards (EHR, interoperability, etc.) or defining guidelines for data protection are not enough; India must outline clear regulations, compliance and build means of monitoring and evaluation and accountability. For instance, in Bangladesh, doctors sign in and out using biometric fingerprint scanners at the points of care, which is then uploaded to the Ministry of Health.
Healthcare should work best for those who need it most. To protect that, we need to ensure that digital India does not widen the digital divide and make technology in healthcare unreachable for the poor! There is a long and arduous journey ahead, and policy makers, care providers, legal experts, technologists in public and private need to work together towards making health care equitable.
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