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Context
Cancer continues to be one of the major causes of death worldwide and in India, thus posing a growing public health problem. When cancer is a notifiable disease, every time someone is diagnosed they must be reported to the government. There is presently no single and compulsory national system for the registry of oncological diseases in India. A national notifiable status is essential for systemic public health management, precise effective resource allocation and epidemiological tracking.
What is a Notifiable Disease?
A notifiable disease is any disease that is legally required to be reported to government officials by health care providers.
- Goal: It enables epidemiological surveillance, early action in an outbreak and effective resource allocation in real time.
- Statutory Framework: It is regulated mainly by the Epidemic Diseases Act, 1897 at the state level.
- Expanding Scope: In India, non-infectious diseases such as snakebites were recently added to notifiable diseases to record important data, although it is usually used for infectious diseases (e.g., Tuberculosis, COVID-19).
The Current Cancer Surveillance Framework
India currently maintains the National Cancer Registry Programme (NCRP) under ICMR since 1982.
- Registry Types: Hospital Based Cancer Registries (HBRs) and Population Based Cancer Registries (PBRs).
- Coverage Gap: Only 10% to 16% of the total population in India is covered by the NCRP.
- Existing Registries: are highly biased towards urban centres and public health clinics, neglecting to capture a significant amount of data from rural communities and the predominant private sector of health care.
Need for Making Cancer a Notifiable Disease
- Reliability of Burden Estimation: There is a large degree of statistical modelling and sampling in the current national Burden projections, rather than true estimates of absolute numbers at any given time.
- Identification of Geographic Hotspots: Some areas have elevated rates of particular cancers such as gallbladder cancer in the Indo-Gangetic plain.
- Resource Optimization: The correct tracking of cases determines where to place oncology clinics, tertiary care facilities and equipment, and deploy special oncologists.
- Policy Formulation: Authentic numbers are used to design screening campaigns under the government welfare programme such as Ayushman Bharat (PM-JAY).
- Research and Development: Epidemiological information specific to India is essential to know about the variation specific to the Indian population and to design clinical trials in India.
Key Benefits for Public Health
- Early Detection Systems: Regional trends can be monitored to implement the screening resources proactively, so that the overall survival rate would be improved.
- Private Sector Integration: Reporting to private healthcare units will ensure the inclusion of higher-income and urban patient segments.
- Financial Protection Tracking: Policymakers can trace and mitigate the catastrophic out-of-pocket expenditure trends caused by expensive oncology treatments.
- Strengthening Primary Care: Data supports trainings for frontline health-care workers such as ASHAs to identify local environmental risk factors early.
Challenges in Implementation
- Infrastructure Deficit: Many rural health care centers do not have digital health records and reliable Internet access to provide real-time information.
- Medical Medical History: Privacy Concerns are in High Demand in Safeguarding Sensitive Patient Medical History under the Digital Personal Data Protection (DPDP) Act.
- Administrative Burden: Medical professionals and hospital staff, who are already busy, might be reluctant to deal with the extra paperwork involved in meeting statutory requirements.
- Diagnostic Limitations: There are high incidence rates of misdiagnosis or late diagnosis in rural areas, resulting in many cases going undiagnosed.
Way Forward
- Legislative Action: Ensure central mandate to ensure that ALL registered medical practitioners and pathology laboratories are legally obligated to report cancer.
- Cancer Reporting Integration: Cancer reporting seamless integration with Ayushman Bharat Digital Mission (ABDM) through Ayushman Bharat Health Accounts (ABHA).
- Public-Private Partnerships: Simplify and digitalize reporting interfaces of private laboratories to facilitate data logging.
- Awareness Campaigns: Train primary health staff on mandatory notification guidelines to eliminate underreporting issues in the rural areas and increase the compliance of data.
Conclusion
Transforming cancer into a notifiable disease is no longer optional but a strategic necessity for India’s healthcare architecture. The effective implementation of universal data tracking will effectively move India from the reactive treatment models towards proactive, preventive, oncological approaches.
Source: The Hindu
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