“Registries are not only a tool for data collection, they are for action”: Cancer registration and gaps in data for health equity in six population‐based registries in India

Abstract

In India, population‐based cancer registries (PBCRs) cover less than 15% of the urban and 1% of the rural population. Our study examines practices of registration in PBCRs in India to understand efforts to include rural populations in registries and efforts to measure social inequalities in cancer incidence. We selected a purposive sample of six PBCRs in Maharashtra, Kerala, Punjab and Mizoram and conducted semistructured interviews with staff to understand approaches and challenges to cancer registration, and the sociodemographic information collected by PBCRs. We also conducted a review of peer‐reviewed literature utilizing data from PBCRs in India. Findings show that in a context of poor access to cancer diagnosis and treatment and weak death registration, PBCRs have developed additional approaches to cancer registration, including conducting village and home visits to interview cancer patients in rural areas. Challenges included PBCR funding and staff retention, abstraction of data in medical records, address verification and responding to cancer stigma and patient migration. Most PBCRs published estimates of cancer outcomes disaggregated by age, sex and geography. Data on education, marital status, mother tongue and religion were collected, but rarely reported. Two PBCRs collected information on income and occupation and none collected information on caste. Most peer‐reviewed studies using PBCR data did not publish estimates of social inequalities in cancer outcomes. Results indicate that collecting and reporting sociodemographic data collected by PBCRs is feasible. Improved PBCR coverage and data will enable India's cancer prevention and control programs to be guided by data on cancer inequities.

Differences in the incidence and mortality of digestive cancer between Global Cancer Observatory 2020 and Global Burden of Disease 2019

“…Rural underreporting is linked to low awareness, poor records and lack of follow‐up 30 . Staff retention, address verification, stigma, migration and caste impact PBCR effectiveness 31 . Pakistan's cancer registries contributed to local statistics but lacked forums for communication, preventing their data from contributing to national figures 32,33 .…”

Assessing mortality registration in Kerala: the MARANAM study

“…Although government agencies prepare an annual report based on these data, they are not used to estimate life expectancies or understand the determinants of mortality. 14 In this, there is a case for improving capacity within government agencies to make fuller use of these data (Bhatia et al, 2021 ).…”

Role of verbal autopsy in cancer registration: A mixed‐methods study from the population‐based cancer registry of Northern India

“…This method is adopted when family members destroy or refuse to share patient documents. A similar methodology for data collection is adopted by the Sangrur PBCR, India [3].…”

“…Cancer is not a notifiable disease in India, hence cancer registration requires systematic data collection by active case-finding through community interactions and abstracting information from patients' medical records and death certificates (DC) [1,2]. Due to limited resources and data quality issues, Indian cancer registries cover only 15% of urban and 1% of rural populations [3]. With the second-largest population, which is predominantly rural, Indian cancer registries encounter hurdles in data collection because of (i) weak peripheral healthcare infrastructure and referral systems, (ii) inequities in access to quality cancer care, (iii) delayed cancer care pathways resulting in advanced cancers in the majority of diagnosed patients, (iv) no or poor treatment documentation, (v) a deficient vital registration system, (vi) absence of mandatory notification leading to lack of support in accessing patient records from hospitals and laboratories, (vii) complicating cultural practices and migration and (viii) poor cancer awareness [1][2][3][4][5].…”