The National Centre for Disease Informatics and Research (NCDIR) is unable to update the city’s Population-Based Cancer Registry (PBCR) since it is not receiving data from hospitals and labs. The last PBCR for the city was published in 2012-14.
The Kidwai Memorial Institute of Oncology, the designated nodal agency for data collection, says it has been terribly short-staffed to gather data. The four investigators working with the institute are struggling to collect data on the deaths from 120 establishments — 60 hospitals and 60 labs — besides the 198 wards of the Bruhat Bengaluru Mahanagara Palike.
Kidwai is still correcting errors in the 2016 data for Bengaluru, while Chennai has moved on to the 2018 data set. PBCRs are crucial to develop cancer control plans and to monitor their success.
The programme is beset by several challenges like low coverage, urban dominance, poor data quality, lack of awareness in rural areas and lack of follow-ups.
It also suffers from issues like high registration cost, inability to connect various PBCRs with Hospital-Based Cancer Registries (HBCRs) and generalisation of estimates at the country level.
“There are 36 PBCRs in the country,” pointed out Dr Prashant Mathur, director, National Centre for Disease Informatics and Research. “Though cancer was made a notifiable disease in 2015, only 44 hospitals are on our portal from the entire state and even lesser from Bengaluru.” He said registration of data on cancer patients alone would not work.
“It is a long drawn-out process. It’ll take up to two years. A patient has to be followed-up for that duration and their treatment outcome must be registered,” he added.
Kidwai’s professor of epidemiology Dr Vijay C R said the hospital should be able to send the NCDIR 2016 data in a month’s time.
“Suppose if there’s 65,000 deaths, it’s not enough if we report them. We need to match them with the cause of death. NCDIR doesn’t accept data with an incorrect ratio,” he said.
Dr C Ramachandra, director of Kidawai, said he suggested imposing fines on hospitals that fail to send data while attending a government health department meeting.
“This (process) can’t be promptly completed without error unless there’s (drastic) action,” Dr Ramachandra said.