Cancer should be declared as notified disease: Parliamentary panel

NEW DELHI: The parliamentary standing committee on health and family welfare has recommended that cancer be classified as a notifiable disease.

The 139th report on "Cancer Care Plan and Management: Prevention, Diagnosis, Research & Affordability of Cancer Treatment" was submitted to the Rajya Sabha Chairman on Monday.

"The Committee notes that Cancer is still not classified as a notifiable disease which results in underreporting of cancer deaths. The Committee notes that ambiguity on the actual cause of death is a major hurdle in data collection. It has been brought to the notice of the Committee that many times death is simply recorded as a cardio-respiratory failure without mentioning the actual cause of death," the report mentions.

The Committee is of the view that an accurate mortality database in the hospital information system will improve cancer registry, follow up and outcome data.

"The Committee, therefore, agrees with the suggestion of TMC that cancer must be classified as a notifiable disease so that the cancer deaths are mandatorily required to be reported to the Government machinery."

The committee, headed by MP Ram Gopal Yadav has recommended the creation of a CoWIN-like portal for registration, real-time data collection, counselling, supportive resources for cancer care along with interactive tools.

"The Committee further recommends that to streamline and improve data collection a CoWIN-like web portal for the registration, real-time data collection, counselling, supportive resources for cancer care along with interactive tools can be created by the Government. The portal can also be equipped to aid those affected by cancer by guiding them through the treatment and management journey," it added.

The Committee strongly believes that making Cancer a "Notified Disease" will surely ensure a robust database of cancer deaths and also help in determining the accurate incidence and prevalence of Cancer in the country.

It will also help in analyzing the risk factors, implementing screening programs, and allocating proper resources to improve cancer outcomes. Data collected can also be used to formulate standard treatment guidelines that will further strengthen the continuum of cancer care.

The Committee expressed its deep displeasure over the National Cancer Registry Programme (NCRP) is working since 1982 through Population Based Cancer Registry (PBCR) and Hospital Based Cancer Registry (HBCR) but only 10 per cent of the Indian population is covered under PBCRs.

The Committee strongly believes that there is an urgent need to have more rural-based PBCRs to get realistic information about the incidence and type of cancers across the country.

"The Committee strongly believes that there is an urgent need to have more rural-based PBCRs to get realistic information about the incidence and type of cancers across the country. The Committee recommends National Centre for Disease Informatics and Research (ICMR) take requisite action to set up a population-based cancer registry in rural areas in the States viz. Uttar Pradesh, Madhya Pradesh, Andhra Pradesh, Rajasthan, Telangana, and Orissa to ensure coverage of the population by registry in these States. Such requisite action is all the more necessary to collect data & information not only for policy making on cancer treatment but also for uniform distribution of cancer care," Parliamentary panel report noted.

The Committee also recommends the Ministry take measures to expand the scope of PBCR and ensure conducting more rural-based PBCRs to get accurate information about the incidence and types of cancer across the country With the integration of the real-time health records on a digital platform like a central registry system so that the data can be accessed across the country and there is no duplication.

The Committee further recommends the Ministry ensure the linking of Cancer Registry data with Ayushman Bharat / PMJY, mortality databases, and the Hospital Information System (HIS) would improve cancer registration, follow up and outcome data.