Media365
A long-standing demand to make cancer a notifiable disease across the country may finally be within reach. If implemented well, this could mark a turning point and change how India counts, plans for and responds to cancer. In its recent order, the Supreme Court asked the 19 states and Union territories where cancer has not yet been declared a notifiable disease to consider doing so. It also asked whether mandatory guidelines from the Centre are needed to bring uniformity.
The states should respect the Court’s order in its full sense and begin the process without further delay. Experience from states where notification is already in place can provide useful lessons. But differences in reporting and use of information make it difficult to build a comparable national picture. India needs common national guidelines for cancer notification. The Ministry of Health and Family Welfare should establish a standard minimum dataset, common definitions and timelines, uniform safeguards and compliance rules. Healthcare providers and laboratories will need training, technical assistance and a practical transition period.
The Indian Cancer Society, which completes 75 years in 2026, has long advocated stronger cancer surveillance because better data is the foundation of better cancer care. Notification can provide timely information on diagnosed cases, while registries can validate, enrich and analyse it to understand incidence, patterns and trends. Data is not merely about knowing how many people have cancer. It is about knowing where the disease is, who is affected and where the health system needs to respond. Linked with registry and health-system data, notification can reveal geographic patterns, high-risk populations, delays and dropouts, and show where additional staff, diagnostic capacity or financial support are needed.
The implications for health planning are considerable. How does a government decide how many hospitals a district needs, whether facilities are adequate, how many professionals are required or where specialised cancer services should be developed? Such decisions should be based on disease burden and population need. Cancer information must flow from facilities at every level, including smaller hospitals and diagnostic centres, into a system that can bring the data together. States have different levels of technical capacity and some will need the Centre’s support through training, standardised protocols and digital infrastructure. Reporting must be simple, practical and interoperable with hospital, laboratory and cancer registry systems, including where connectivity is limited. A common digital backbone could provide shared standards while integrating existing systems. CoWIN demonstrated India’s ability to operate digital public-health infrastructure at national scale. Cancer notification requires a different architecture, especially for longitudinal information, interoperability and privacy, but deserves the same ambition.
Reliable data can also improve planning for medicines, diagnostics, radiotherapy and emerging therapies by helping governments, healthcare providers and the pharma industry anticipate demand and improve availability. Data protection, however, must be non-negotiable. Cancer information is deeply personal. Any national system must safeguard access, privacy, cybersecurity and permitted uses of information, with clear rules on identifiable data and anonymisation. Better notification may initially make India’s cancer numbers appear higher. This should not be interpreted as a sudden increase in prevalence. More comprehensive reporting will identify cases previously outside formal records; an initial rise may simply mean we are seeing the problem more clearly. Over time, consistent data can identify trends and gaps in care, strengthen research, guide resources and help policymakers assess whether interventions are improving outcomes. Most importantly, it can move cancer planning from estimates towards evidence.
The SC has opened the door. States should move promptly, while the Centre provides the standards, technical support, digital infrastructure and safeguards needed to make notification work consistently. Ultimately, this is about making every cancer diagnosis count. A diagnosis should not remain confined to an individual hospital record when, with appropriate privacy protection, it can help show where cancer occurs, where care is falling short and where resources are most urgently needed. We should use this moment not merely to count cancer cases, but to build the knowledge India needs to fight cancer more intelligently, more equitably and more effectively.
The writer is chairperson, Indian Cancer Society, Delhi Branch
