India's Cancer Data Challenge: Low Coverage Hinders Progress

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Cancer remains a severe public health challenge in India. According to a report by the National Cancer Registry Programme (NCRP) under the Indian Council of Medical Research (ICMR), the number of cancer cases is projected to rise from 1.39 million cases in 2020 to 1.57 million by 2025. The projection was based on data pooled from a network of cancer registries under the NCRP that track new cancer cases, prominent cancer sites in the body, grades and stages, and provide insights into the burden, pattern, and distribution of cancers. However, a critical gap undermines these efforts, as India continues to have a low coverage of Population-Based Cancer Registries (PBCRs). About 18 percent of the country’s population is covered, leaving large regions without surveillance, especially rural, tribal, and underserved populations.

The NCRP established operations in 1981 with three PBCRs and three Hospital-Based Cancer Registries (HBCRs) to track and analyse India’s growing cancer burden. Four decades later, the country has 48 PBCRs, most of which are located in urban areas and cover just about 1 percent of the rural population. The number of HBCRs currently stands at 324.

Cancer registration in all forms is crucial; however, PBCRs are considered the gold standard, as they cover defined geographic areas and measure cancer incidence, mortality, and related trends vital for devising national strategies for early detection and prevention. On the other hand, HBCRs collect data from patients at specific healthcare facilities, offering insights shaped by available infrastructure and specialities, and are useful in improving hospital services and patient care.

Data from these registries—primarily PBCRs—guides the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Disease and Stroke (NPCDCS), the Ministry of Health and Family Welfare’s (MoHFW) key programme on non-communicable diseases. The Ministry has also linked cancer registries to its screening programmes for oral, breast, and cervical cancer, which together account for 34 percent of all cancers in India.

Most recently, the MoHFW’s cervical cancer task force used PBCR data to recommend a nationwide rollout of the Human Papillomavirus (HPV) vaccine in their 2024 white paper. Population-based surveillance is essential for planning and expanding HPV vaccination and cervical cancer screening globally as well.PBCR data have also served as crucial evidence linking cancer incidence and specific types of cancers to the high tobacco use in India, strengthening tobacco control efforts under the 2003 Cigarette and Other Tobacco Products Act (COTPA). These include the wider coverage of pictorial warnings on cigarette packets, on-screen warnings in films and television serials, cinema hall advertisements, a national toll-free quitline, and the ban on e-cigarettes. With available insights into tobacco use, COTPA broadened its scope to cover products such as bidis, hookah, chewing tobacco, gutka, and pan masala, and enabled state-specific actions such as a gutka ban.

Cancer is not notifiable in India

An underlying challenge in strengthening cancer surveillance is that cancer is not notifiable in India. There have been long-standing demands for mandatory reporting of the disease, which could provide the much-needed impetus to PBCR coverage. However, in a response to a 2024 case filed at the National Human Rights Commission seeking to make cancer notifiable, the MoHFW stated that cancer is a non-communicable disease and not an infectious one. ‘It does not spread from one person to another, or also does not have any community spread. In present circumstances, it may not be declared a notifiable disease,’ the MoHFW noted.

While a pan-India legal mandate remains absent, at least 15 Indian states have mandated cancer notification. Nonetheless, some of the most populous states, such as Maharashtra, Uttar Pradesh, and Bihar, are not on this list. Compulsory cancer reporting requires robust data and identity protection mandates, which were found lacking in some of these states. In addition, states also require standardised training for registry personnel, adequate infrastructure, and well-synchronised systems at healthcare institutions to ensure thorough and accurate cancer reporting. Such an initiative could help bridge the existing urban-rural registry gap and strengthen the case for increased budget allocations for targeted cancer control interventions.

Sustained funding is another crucial factor for operating and maintaining registries. In low- and middle-income countries (LMICs), registries that cover larger populations tend to have a lower average cost per person. Although based on a 2016 study, Mumbai’s PBCR—which covered over 17 million inhabitants during the study period—incurred a cost of just US$0.01 per person. A more recent 2019 study from four sub-Saharan African countries also showed that the cost per inhabitant ranged from US$0.01 to US$0.17.

Global Perspective

An ideal registry programme ensures nearly 100 percent coverage within a defined population, registering every case. However, according to the Cancer Incidence in Five Continents (CI5), Volume XI, published by the International Agency for Research on Cancer (IARC) in 2021, the global average is a mere 15 percent. The coverage varied widely, with Africa at 1 percent, Central and South America at 8 percent, North America at 98 percent, Asia at 7 percent, Europe at 46 percent, and Oceania at 77 percent.

The United States (US)—with its two key registry programmes—boasts a near-total coverage. The National Programme of Cancer Registries (NPCR) covers over 96 percent of the population, according to a 2018 study, while the Surveillance, Epidemiology, and End Results (SEER) Programme covers nearly 45.9 percent of the population, based on 2022 data. High-income countries such as the United Kingdom, Australia, and South Korea also have nearly 100 percent coverage, as reported in a 2024 article.

According to a 2024 article, China’s cancer registration efforts now cover approximately 40 percent of the population, reflecting steady improvement. Nepal is in the early stages of building a population-based cancer registration system, whereas Bangladesh still lacks one. Several African countries continue to face challenges in meeting their cancer registration capacities. Countries such as Thailand and Brazil have made significant progress, despite limited resources.

The launch of the Global Initiative for Cancer Registry Development (GICR) by IARC in 2011 has been crucial for building cancer surveillance capacities with standardised training modules, especially in LMICs. Mumbai serves as the GICR’s South, East, and South-Eastern Asia hub since 2012, facilitating training and mentorship to registries in India and its neighbouring countries. Despite these partnerships, knowledge-sharing opportunities, and India’s growth as a regional leader, the expansion of its population-based surveillance has been slow.

Way Forward

India must build on its existing institutional strengths, the available international expertise, and digital ecosystems to transform and rapidly expand its cancer surveillance. Establishing registry linkages with the Ayushman Bharat Health Account (ABHA)—under the evolving Ayushman Bharat Digital Mission (ABDM)—could prove to be a step in the right direction to allow real-time data and reduce duplication.

As cancer trends shift with a rapid increase in lifestyle-related diseases and climate change-induced health impacts, relying on incomplete or skewed data can be detrimental.

The PBCRs and HBCRs complement each other, with hospital data often feeding into the population-based systems. Nonetheless, thorough/veritable participation from hospitals—especially the private sector—persists as a challenge due to a lack of a legal mandate to notify, reluctance to share data, concerns over confidentiality, and the absence of standardised digital formats and reporting structures. To bridge this gap, India can leverage the National Cancer Grid (NCG)—an existing public-private partnership comprising nearly 360 cancer centres and research institutions. While NCG’s primary goal is to standardise cancer care, clinical protocols, and training, it also tracks cancer trends and magnitude through registries and epidemiological studies. The NCG network treats over 60 per cent of India’s new cancer cases annually, and is now adopting digital tools and data-driven roadmaps to improve cancer outcomes. Integrating the NCG with the NCRP’s registry efforts presents a powerful opportunity to strengthen and expand the existing population-level surveillance.

In addition, the NCG is leveraging Artificial Intelligence (AI) tools to digitise health records without having to rely on manual data entry. AI-powered Natural Language Processing (NLP) tools extract relevant information from unstructured clinical texts and contribute significantly to improving registry efficiency. These approaches could be replicated to build next-generation cancer registries.

India ranks third in cancer incidence after China and the US; second in mortality, following China. According to 2022 data, the country recorded over 900,000 cancer deaths. As cancer trends shift with a rapid increase in lifestyle-related diseases and climate change-induced health impacts, relying on incomplete or skewed data can be detrimental. India must therefore put a renewed focus on expanding and upgrading population-based cancer surveillance—through sustained funding, leveraging digital technology and AI, and encouraging wider private sector participation in data reporting. Strengthening such surveillance today is essential to averting a cancer crisis in the future.

Jyoti Shelar is an independent researcher, writer, and a former Mumbai-based health journalist.

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