Cancer should be classed as a notifiable condition, according to the parliamentary standing committee on health and family welfare.
On Monday, the Rajya Sabha Chairman received the 139th report on “Cancer Care Plan and Management: Prevention, Diagnosis, Research, and Affordability of Cancer Treatment.”
“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, led by MP Ram Gopal Yadav, has advocated the development of a CoWIN-style platform for registration, real-time data collecting, counselling, supporting cancer care resources, and interactive technologies.
“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 is certain that declaring cancer a “Notified Disease” will ensure a solid database of cancer fatalities and will aid in estimating the country’s correct incidence and prevalence of cancer. It will also aid in the analysis of risk factors, the implementation of screening programmes, and the allocation of appropriate resources to enhance cancer outcomes. Data collected may also be utilised to develop standard treatment guidelines, which will help to enhance the cancer care continuum.
The Committee highlighted its significant dissatisfaction with the National Cancer Registry Programme (NCRP), which has been in operation since 1982 via Population Based Cancer Registry (PBCR) and Hospital Based Cancer Registry (HBCR), yet barely 10% of the Indian population is covered by 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 that the Ministry take steps to broaden the scope of PBCR and ensure the conduct of more rural-based PBCRs in order to obtain accurate information about the incidence and types of cancer across the country through the integration of real-time health records on a digital platform, such as a central registry system, so that data can be accessed across the country without duplication.
The Committee further advises that the Ministry ensure that cancer registry data is linked with Ayushman Bharat / PMJY, mortality databases, and the Hospital Information System (HIS) to enhance cancer registration, follow-up, and outcome data.
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