THIRUVANANTHAPURAM: Health professionals have expressed concerns over the inadequate protection of cancer patients’ identities, despite the state government’s efforts to enhance treatment outcomes through population-based cancer registries. A study published in The Lancet medical journal in February, Kerala was not one of the six Indian states that enforce patient identity protection.
Tamil Nadu, Gujarat, Punjab, Haryana, Mizoram, and Tripura were the states with the mandate.
Cancer registries play a crucial role in collecting and managing surveillance data, contributing to the efficiency of cancer control programmes and forming a key component of the state government’s cancer control strategy.
The Kerala Cancer Registry is being developed under the e-Health project, aiming to improve outcomes by 2030.
Currently, three regional population-based registries operate under the Regional Cancer Centre (RCC) in Thiruvananthapuram, Malabar Cancer Centre (MCC) in Kannur, and Cochin Cancer and Research Centre (CCRC) in Ernakulam. All hospitals, including AYUSH centres, are directed to provide data for the registries.
Despite specific directives in the health department’s 2021 order emphasising strict confidentiality in maintaining the identity of cancer patients, researchers found insufficient patient identity protection in the Kerala Cancer Registry project.
“Although Kerala is one of the states that has mandated cancer notification, its implementation leaves much to be desired. For instance, we need assurance on data privacy and more clarity on procedures necessary for its reliable implementation,” said Dr Aju Mathew, consultant oncologist and public health researcher in Ernakulam Medical Centre and MOSC Medical College.
He authored The Lancet report with Dr Edwin Saji of Kerala Cancer Care, Kochi.
“Obtaining reliable and precise data on cancer numbers helps provide better cancer care service delivery and research to change outcomes in the state for patients. Without good data to measure the disease, we cannot improve outcomes,” said Aju.
Health experts have raised the privacy issue at a time when cancer cases are on the rise.
In 2023-23, the RCC reported 15,324 new cases, while the MCC and CCRC reported 7,795 and 1,606 new cases, respectively, according to the latest Economic Review.
Data privacy
Kerala Cancer Registry is being developed u and Research Centre (CCRC) in Ernakulam