1 Introduction

The International Agency for Research on Cancer (2022) estimated that there were 20 million new diagnoses of cancer and 9.7 million deaths recorded globally [1]. One in every four men and one in every five women develop cancer, and one in every eight men and one in every eleven women die from it. In 2018, 43.8 million people were diagnosed with cancer during the past five years[2].

According to the 2020 World Cancer Report, India ranks second among countries where cancer is the primary cause of premature death among individuals aged 30–69. In India's population of 1.37 billion in 2018, there were more than 780,000 recorded cancer fatalities and 1.16 million new cancer cases. Additionally, one in ten Indians is likely to develop a new type of cancer, and one in fifteen is expected to succumb to it in their lifetime [3]Given these statistics, establishing a cancer registry is imperative to enable healthcare professionals, researchers, and policymakers to comprehend the disease pattern, allocate resources efficiently, develop targeted strategies for cancer prevention, and provide evidence-based solutions for diagnosis and treatment.

Cancer registry lists and gathers information on all cancer patients in a nation or area compiled by hospitals, related organisations, and healthcare specialists [4]. The primary function of cancer registries is the systematic collection, storage, analysis, generation, and interpretation of valuable cancer data [5].

Primarily, there are three types of cancer registries, focusing on a distinct component of cancer surveillance: hospital-based registries, which compile information on all cancer cases treated at a single institution; pathology-based registries, which collect information from single or several laboratories on histologically diagnosed tumours; and population-based registries, which systematically compile information on all treatable neoplasms occurring in a geographically specified population[6].

India has 236 hospital-based cancer registries and 36 population-based cancer registries [7]. While population-based cancer registries (PBCRs) are considered the most accurate method for assessing cancer incidence within a specific community, their implementation presents substantial challenges. Low PBCR coverage is notably prevalent in regions such as South America (19%), Asia (15%), and Africa (13%)[8]. According to one study, PBCR coverage is only 10% in India, which includes only 0.1% of the rural population [9]. Furthermore, most LMICs face obstacles in establishing effective governance structures for cancer prevention, management, and control [8].

On the other hand, hospital-based cancer registries (HBCRs) require fewer resources and offer significant advantages in resource-constrained settings, where setting up PBCRs is a formidable task. Although hospital-based cancer registries (HBCRs) aim to aid with patient care and outcomes that help in administrative monitoring, they may also be helpful for epidemiological reasoning [5]. For instance, HBCRs may face challenges in capturing comprehensive population-level data and may not fully represent the true burden of cancer within a community. Despite these drawbacks, HBCRs play a crucial role, especially in low- and middle-income countries (LMICs), where setting up PBCRs can be a formidable task. Historically, LMICs have relied more on HBCRs, which are often more accessible than PBCRs. Moreover, HBCRs can be an essential initial step in establishing comprehensive PBCRs [8].

However, the role of hospital-based cancer registries (HBCRs) in overseeing cancer care in low- and middle-income countries remains unclear [10, 11]. In our previous systematic review [8], we found that there is a need for an ethnographic study to understand the functionality and work culture of HBRCs, which leads to long-term sustainability and helps to establish PBCRs in the LMIC context. Therefore, this study aimed to observe the functioning of active hospital-based cancer registries in India regarding functionalities, core processes, and team involvement, identify factors facilitating its functioning, and explore related issues.

2 Methods

2.1 Study design

An ethnographic approach was followed; qualitative data collection methods such as observation, in-depth interviews (IDIs), and document review were employed. This involved engaging stakeholders to understand the registry’s functionality, core processes, team dynamics, and facilitators better [12, 13].

Ethnography is a well-established research methodology involving studying human behaviour within cultural contexts. As noted by Hammersley and Atkinson in 1983, this approach requires the analysis of various sources of data. They were initially designed to examine large groups of people. However, in 1989, Fetterman highlighted its value in smaller settings, such as work-related activities. For optimal results, Townsend, in 1996, recommended using a combination of observation, interviews, and document reviews as data sources in ethnographic research. Employing these three methods together can substantially enhance the accuracy and validity of the study. We followed Brewer’s (2000) ethnographic research approach [12]. The study was approved by the Institutional Ethics Committee of the Institute of Medical & Sum Hospital, Bhubaneswar, Odisha, India, under letter no. IEC/IMS.SH/SOA/2022/475, and written informed consent was obtained from all the participants. In this study, all experiments were performed in accordance with relevant guidelines and regulations.

2.2 Study setting and participants

For this study, we selected two hospitals from two different regions of India, one specialising in cancer and the other being a multi-speciality hospital where the HBCRs have been operating for more than ten years. The cancer hospital was established in North India (Assam), where the HBCR was established in 2011, while the HBCR in the multispecialty hospital in South India (Andhra Pradesh) was established in 2013. As this is an ethnographic study that requires a deeper understanding, the first author of this article stayed in both hospitals for one month each. To uphold ethical standards, we have chosen not to disclose the names of the hospitals.

The first author interacted with key stakeholders, including the head of the registry and staff from the HBCR department, such as data abstractors, data entry operators, medical social workers, and OPD registration staff, and reviewed registry documents. A purposive sampling approach was utilised to recruit persons for an interview, ensuring the involvement of only experienced staff from the HBCR and hospital, as required by the topic.

2.3 Participant recruitment strategies and data collection methods

Initially, the names of the active HBCRs were collected from the National Cancer Registry Program Report—HBCR, published in 2021, which included 96 HBCRs, who maintained continuity from 2012 to 2019 [14]. Since, typically, ethnographic studies can take place even in a single study setting, emphasising observation and interviews with the participants [15], the corresponding author randomly selected 10 HBCRs and the heads of the respective HBCRs were contacted through email and shared the protocol. Two hospitals that positively responded first (one from the North and another from the South) were selected. A checklist was developed following Cancer Pedia to observe the registry (Supplementary file 1) [16]. The observation checklist included a review of administrative records, clinical records, legal and financial records, facilities and equipment, and human resources.

We used semi-structured interviews to gain clarity and ensure reliability [12]. The IDI guide gathered information on establishing HBCRs, human resources and workspaces, training, required equipment and services, implementation processes, and sustainability. The IDI was conducted in English and Hindi for twenty to thirty minutes.

2.4 Data management and analysis

The IDIs were captured digitally and then transcribed and translated into English. First, second, and corresponding authors had earlier exposure to ethnography studies, so we analysed the data using standard protocols [17]. The step-by-step analytical process is provided in Table 1. The data were analysed using MAXQDA Analytics Pro 2020 (VERBI GmbH Berlin). The Consolidated Criteria for Reporting Qualitative Research guidelines were used to report the study results [18].

Table 1 Step-by-step analytical process

3 Results

The observed findings were categorised into three major themes: [1] existing management strategies and infrastructure, (2) implementation process, and (3) sustainability and scalability of the registry model. The comprehensive thematic framework is visually represented in Fig. 1.

Fig. 1
figure 1

Comprehensive thematic framework

3.1 Existing management strategies and infrastructure

3.1.1 Initiation of the HBCR

According to the staff of the North HBCR, the registry was initiated in 2011. First, they needed a clearer understanding of the registry. First, the HBCR team consisted of only three individuals: the head of the HBCR (an onco-surgeon), a physician, and a medical social worker. According to the medical social worker of the registry, during the initial phase, the head of the registry (HOR) taught them about basic human anatomy and cancer, including TNM classification and cancer stages.

“The hospital director established the registry here as he had a special interest because he always said cancer registry plays a significant role in the cancer control program” (Staff of the North HBCR).

According to the Head of the South HBCR (a pathologist), as a multispeciality hospital, the hospital initially functioned with several departments, such as surgery, medicine, gynaecology, pathology, and paediatrics. Originally, the hospital's primary focus was maternal and child health. Although cancer cases had been reported to the hospital since 2000, the initiation of cancer treatment had not commenced. Subsequently, in 2013, the Hospital-Based Cancer Registry (HBCR) was established at their institution.

I have been working in this hospital since 2000. Then, only one gynaecologist was involved, and she insisted on establishing a hospital-based cancer registry, as she was experiencing many cases of cervical and breast cancer. I went abroad and learned about the importance of a cancer registry. After returning in 2010-11, with support from other colleagues, he initiated the HBCR.

(Head of the South HBCR)

3.1.2 Establishment of the HBCR

According to the heads of both registries (South & North), they initially submitted a proposal to the National Centre for Disease Informatics and Research (NCDIR-ICMR) to establish the register. The project proposal included the following metrics: total annual hospital visits, number of cancer diagnoses, gender breakdown by diagnosis, and average age of patients. The required human resources, salary structure, and money needed for contingency were also included in their HBCR project proposal. The head of the South HBCR mentioned that although the NCDIR agreed to release the funds, their organisation denied it and has managed the registry with the hospital’s funds.

However, after acceptance of the proposal, North HBCR obtained funds from the NCDIR to run the registry, and they continue to receive funds to date. The HOD mentioned that in the beginning, the NCDIR agreed to allocate funds for only up to three years; subsequently, the funds would be reduced to 75% of the funds, and the hospital would manage the rest. However, they have been receiving total funds from the NCDIR. Incidentally, the hospital authority agreed to work with the HBCR even if the funding was stopped completely.

3.1.3 Human resources and workspace

In the North HBCR, the medical records department and the HBCR are under the Department of Epidemiology and Tumour Registry, which has three rooms—one for the staff and the other two for maintaining the physical records of the patients. Each patient file had a unique ID and was kept serially year-wise. The HBCR employees comprised two physician-oncologists, one head, one medical social worker, one data entry operator, and two employees who maintained the files.

South-HBCR consisted of three employees, with the head of the registry (a pathologist), one physician and one research coordinator with the qualifications of master’s degrees in social work. As per the HOD, the research coordinator left his job a few months ago, and thus, he is currently handling the data abstraction. Staff from other departments helped him with the data abstraction whenever needed. The Medical record department and HBCR are separate units in their hospital, and as he is the HOD of the pathology department, he is managing HBCR at the pathology department. According to the observations, both the registries accurately adhered to our checklist, and specific aspects of this checklist observation are elaborated under the subsequent themes.

“If a normal person conducts the data abstraction without a medical background or experience, it will be more challenging, and more errors will occur. There is a difference between the data entry by a medical and a nonmedical person."

(Head of the HBCR-South)

“The HR policy, like leave and holidays, is the same for the registry staff as other hospital employees. The hospital makes even the salary system for registry staff, not the NCDIR/ICMR."

(Head of the HBCR-North)

3.1.4 Training

At the beginning of the HBCR, three staff members went to Adyar Cancer Hospital, Chennai, for training, which included data abstraction, coordination with other departments, managing electronic health records, etc. Their hospital covered the total cost of the training program (travel and accommodation). The duration of the training program was one and a half months.

NCDIR also arranged a training program for the staff of HBCRs in both regions. Generally, they also arrange meetings every year regarding the status of the registry. Both HBCRs agreed that the registry staff should have basic knowledge of human anatomy, treatment provided by the oncologist, palliative and curative care, chemo- and radiation therapy, etc.

3.1.5 Required equipment and services

Both the heads of the HBCR from North and South said that equipment such as computers, scanners, software, the internet, and services such as IT support are necessary to run the HBCR. They noted that the NCDIR provides HBCR software free of cost and is user-friendly. The hospital digitally maintains all patient records with the help of the IT department. The IT department is responsible for maintaining the hospital's electronic medical records. The authors also have an ethical committee in their hospital, which helps obtain scientific publications from HBCR data.

“In our hospital, all the departments are digitally connected. If the IT department is robust, then there is no need to go to another department all the time for patient data collection. Our hospital software allows us to easily access all patient data, such as pathology and other clinical data”.

(Staff of the North HBCR)

3.2 Implementation process

3.2.1 Available services

The North HBCR is a dedicated cancer hospital offering a comprehensive range of facilities. Specialised departments are available in this hospital, including preventive oncology, pathology, radiology, medical oncology, surgical oncology, radiation oncology, pain and palliative care, molecular oncology, microbiology, and pharmacy. To assist patients, a resource management unit in the hospital aids in accessing government schemes and various sources of financial assistance.

The HBCR, based in the South, is a 240-bed multispecialty hospital. This hospital offers a diverse range of services to cater to the varying needs of its patients. It provides various services, including cancer screening, radiology, pain and palliative care, pathology, biochemistry, microbiology, general surgery, orthopaedics & traumatology, neonatology & paediatrics, obstetrics & gynaecology, critical care & ICU, emergency medicine and internal & family medicine.

3.2.2 Registration process at the hospital

According to the observations and in-depth discussions with the heads of the two HBCRs, whenever a patient arrives at their hospital first, they will visit the registration counter, and each patient is assigned a unique registration ID. The registration fees for the North and South HBCRs are 600 (for a lifetime) and 60 (for three months), respectively. At the registration counter, they receive one blue sheet, which the patient has to fill out with the help of their family members and/or hospital staff. The detailed information, which is included in the blue sheet, is shown in Supplementary File 2. Along with their details, they must fill out another form containing the contact information of six of their relatives and a consent form. The hospital will be able to maintain confidence in the information. During the registration process, both HBCRs systematically compiled prior medical reports, such as CT scans, biopsy results, and discharge summaries, amalgamating them into a consolidated patient file. This file encompasses personal details (blue sheet), a notebook, and all relevant test reports. Within the notebook, physicians meticulously document treatment specifics, diagnoses, clinical information, conditions at discharge, discharge advice, case summaries and future visit schedules for inpatient (IP) and outpatient (OP) patients. The registration processes at the North and South HBCRs are illustrated in Fig. 2.

“Case Summary: Mr. (XXX), a 46-year-old gentleman, was diagnosed with Ca-prostate with multiple bone metastases. A treatment plan for weekly chemotherapy (DOCETAXEL) was developed. The patient completed the 9th cycle of weekly chemotherapy on 05/01/2021. Weekly chemotherapy was changed to three weekly for three more cycles. He had received two cycles on 08/02/2021. The second chemotherapy cycle, cycle 3, was due to CBC/KFT on 01/03/2021. The due date for the next zoledronic acid was 8/03/2021 with CBC/KFT. In cases of fever, vomiting, diarrhoea and other health problems, please contact +91XXX—weekly CBC on 15/02/2021”.

(Case summary for the North HBCR)

Fig. 2
figure 2

Registration process

Following registration at the counter in both HBCRs, patients proceeded to the Medical Social Worker (MSW) chamber along with their comprehensive medical file. An in-depth inquiry into the patient's family history and financial status was conducted here. Subsequently, the MSW uploads this crucial information to the Hospital Management System (HMS), which serves as the Electronic Health Record (EHR). This systematic digitisation ensures seamless accessibility for doctors, relevant medical personnel, and registry staff, facilitating efficient information retrieval. The next phase involved the patient visiting the outpatient department (OPD) for diagnosis. Postdiagnosis, patients return to the MSW chamber for counselling regarding potential financial assistance, including insights into government-provided insurance schemes and other relevant avenues. The hospital provides free-of-cost diagnostic tests for patients with a lower economic status. Furthermore, once treatment commences, eligible patients can avail themselves of an applicable insurance scheme.

“Patients believe that if they go for a biopsy, then cancer will affect them, so in this case, we must counsel them. We explain that cancer status can be identified if patients undergo this test. Some patients have these blind beliefs about these tests, so we counsel them regarding their benefits.” (MSW of North HBCR)

The South HBCR is not a cancer hospital; if the doctors find any cancer-related symptoms, they refer them to the cancer screening centre, where if they find any clinical signs, a biopsy is advised.

“Our hospital primarily gets gynaecology-related cancers such as breast, ovary, etc., as we have a gynaecology department. We have a separate unit for cancer screening, where patients come from the OPD upon referral. Since our hospital does not have an oncology department, we have MOUs with other hospitals whenever needed.” (Head of south HBCR)

Following these steps, as per the Doctors' suggestion, the patients are admitted to both hospitals. In the North HBCR, the patient file comes to the medical records department (MRD) and tumour registry. However, the file was moved to the MRD in the South HBCR, as the HBCR and MRD are two different departments. Whenever the HBCR department needs any data, it collects it from the MRD. On the scheduled appointment day, the patient records are transferred to the outpatient department (OPD) at both hospitals through an attendant. In both hospitals, the MRD staff make a reminder call before the appointment date. Figure 2 illustrates the registration procedure for both HBCRs.

3.2.3 Hospital management system (HMS)

Both hospitals have a hospital management system (HMS), a web-based software for managing patient data, including electronic medical records, laboratory tests, radiology images, and pharmacy records. In this software, all the patient data were uploaded by MSWs and nurses as described earlier. Furthermore, since this software operates with an intranet facility, it does not require an internet connection. HMS helped them monitor the patient's health records and helped the registry staff with the data abstraction process.

“During the data abstraction process on HBCR software, when we needed any information about the patient, we used our hospital software (HMS). When we enter the patient’s name and ID in the HMS, it will show everything about the patient, including the doctor who treated him and the surgery date. For example, if one patient has surgery on Monday, then one staff member from our department will remind the patient on Friday about their surgery." (Staff of North HBCR).

3.2.4 Data abstraction

We observed that both registries collected secondary data using patient files and the Hospital Management System (HMS) for data abstraction. The staff did not collect the data directly from the subjects. They used retrospective methods for data abstraction, as cancer treatment, including chemotherapy and radiation therapy, takes a long time.

"Through retrospective data collection, we can determine how many patients come under complete, incomplete, and no treatment; thus, survival analysis is also carried out." (Staff of North HBCR)

For data abstraction, the ICMR provided the data in a manual form. After completing that form, they used ICMR-provided registry software. The form collects data in four segments: (i) identifying information, (ii) basic demographic parameters, (iii) diagnostic details, and (iv) details of the clinical stage and treatment. There are 39 items in these four segments, with a few to be filled mandatorily, as described in Table 2. According to the head of both HBCRs, the registry staff should have a medical or paramedical degree as a basic understanding of the anatomy, physiology, palliative care, curative care, chemotherapy, radiation therapy and other relevant clinical knowledge needed to handle the data abstraction. The nursing staff plays a vital role in data abstraction since they have updated all clinical information on the HMS and the patient files. From these data, the staff of the HBCR perform data abstraction without much difficulty.

Table 2 Core form-essential variables

“If a medical doctor or someone with a medical background conducts the data abstraction, errors are much less common. There is a big difference between data entry by a medical person and nonmedical person.” (Head of South HBCR).

3.2.5 Interdepartmental coordination

We observed that interdepartmental coordination is one of the keys to the sustainability of the registry. Both HBCRs were well integrated with other departments, and their hospitals were digitalised. The key departments involved in both HBCRs are shown in Fig. 3.

“Suppose a gallbladder operation has been completed in the surgery department, and they remove the stone and the gall bladder; the next crucial step involves a biopsy test. The data on malignancies must be collected from the pathology department. From that perspective, interdepartmental coordination with the pathology department is essential.” (Staff of North HBCR)

Fig. 3
figure 3

Key departments involved in the HBCR

3.2.6 Monitoring mechanism

According to both head of both HBCR, monitoring is conducted when the HBCR works under the NCDIR-ICMR. Whenever any error regarding data completeness occurs, the NCDIR-ICMR team emails the data for rectification. Both HBCR said they used HBCR data for research purposes, and their hospital published annual reports yearly. They expressed that since the HBCR came under the National Cancer Registry Program (NCRP), the ICMR also publishes the NCRP report containing data from all the HBCRs of India, which is available in the public domain.

We also used HBCR data for our hospital benefit, as we have a tumour board, so we provide them whenever they need any data for research purposes. The HBCR software has many advantages, and we extract information whenever needed using the filter option.” (Staff of North HBCR).

3.3 Sustainability and scalability of the registry model

According to the head of the South HBCR, the registry can run with limited funds, but this depends on their interests. He expressed that HBCR is an essential component of cancer control activity and is helpful for administrative purposes and clinical performance reviews. According to a staff member of the North HBCR, data quality is one of the critical components of sustainability.

According to the hospital bed strength, the number of OPD and IPD patients in the NCDIR-ICMR sets the expected number of registrations in the HBCR. Therefore, we need to meet these criteria; as we know, cancer incidence is increasing daily in India, so the number of registrations should increase accordingly. If it is not, then the registry is not kept consistent. In this case, the registry will only be sustained briefly. (Head, North HBCR)

According to the opinion of both registries, the HBCR requires specific funds, resources, dedicated staff, and integration with other departments. The authors noted that the HBCR should be identified as a separate hospital department, including suitable policies for the HBCR, work culture, job responsibilities, and time management for better output.

“See, it depends on the personal interest of the respective persons working in the registry. A person who is sincere or self-motivated can maintain the HBCR consistently. In contrast, it will be run temporarily and then discontinued.” (Head of the South HBCR).

4 Discussion

To our knowledge, this is the first ethnographic exploration of an active hospital-based cancer registry in India where functionalities, core processes and sustainability were observed. Our study highlights critical elements, such as the allocation of designated space, the deployment of adequate skilled human resources, comprehensive training, efficient hospital management systems, interdepartmental coordination, monitoring mechanisms, and other innovative strategies, that lead to a sustainable hospital-based cancer registry (HBCR).

Understanding the importance of HBCR and the involvement of an oncologist (head of HBCR) helped establish the hospital registry. Although funding is essential for establishing such registries, our findings indicate that securing funds from sources such as the National Centre for Disease Informatics and Research (NCDIR-ICMR) through proposal submission and adherence to ICMR guidelines is feasible. We found that the sustainability of HBCR was further bolstered by the deployment of physicians and qualified staff, whose involvement significantly contributed to minimising data management errors. Additionally, comprehensive training for registry staff, encompassing basic knowledge of human anatomy and treatment modalities, is indispensable for understanding and accurately documenting treatment provided by oncologists.

As other departments were well integrated with the registry, the registration processes at both hospitals were well organised. We found that interdepartmental coordination played an essential role in the sustainability of the registry in both hospitals. Digitalisation helped further manage the data appropriately. Data abstraction using retrospective methods per ICMR guidelines helped gather complete information. Both registries operating under the auspices of the ICMR undergo regular monitoring activities conducted by the NCDIR-ICMR, with resulting reports made publicly available online. Our study revealed that hospital policy, data quality assurance measures, and physicians' and oncologists' active involvement and interest are pivotal factors influencing registry sustainability.

In addition to our findings, this research offered valuable insights into cancer registry management practices worldwide. For example, a study conducted in India revealed that a cancer registry can be managed cost-effectively by integrating it with web-based software and training surgeons [19]. Another study highlighted the importance of documentation and data management as critical components of a cancer registry, emphasising the significance of implementing robust documentation practices to ensure effective data management within cancer registries [20]. In a Chinese study, researchers developed a smartphone application that merged biological and clinical patient data for offline use. Clinicians input real-time data, making it a powerful source of real-world data. Integrated with SMS and WeChat, the application enhanced communication between physicians and patients, improving treatment compliance and reducing missed clinic visits. This innovative approach facilitates efficient data collection and enhances patient engagement and communication in the clinical setting. [21].

Research conducted in Tanzania reveals that the sustainability of cancer registries remains challenging in low- and middle-income countries. This difficulty is attributed to several challenges, including insufficient staff, capacity building and limited resources for data abstraction, follow-up, and cancer registry data auditing. The findings underscore the importance of addressing systemic challenges in resource-constrained settings to ensure the long-term viability of cancer registries. Efforts to strengthen human resources, build capacity, and allocate sufficient resources for essential registry tasks are necessary for overcoming these challenges and improving the quality and sustainability of cancer registry operations in Tanzania and similar contexts [22].

A study surveyed physicians, pharmacists, nurses, and data clerks to understand their views on improving the hospital's registry. Participants attended a workshop on the significance of the cancer registry. The findings indicated a need for more clarity among staff about the registry's importance and purpose, with low confidence in using existing resources. Postworkshop, some clerical staff, nurses, physicians, and social workers recognised the crucial role of enhancing the cancer registry in clinical care. Clinicians have stressed the importance of patient follow-up for outcome assessment [23]. According to a Jordanian study of oncology nurses’ attitudes toward electronic health records (EHRs), most nurses believed EHRs saved time, enhanced efficiency, and did not increase costs. Most think EHRs in oncology simplify their work and reduce unnecessary tasks [24].

Overall, these findings contribute to a comprehensive understanding of cancer registry management practices globally and offer insights into potential strategies for improving registry effectiveness and sustainability.

4.1 Policy implications and practice

  • Cancer registry data should be integrated into national health information systems to facilitate comprehensive cancer surveillance and inform healthcare policy decisions.

  • Encourage policymakers to allocate resources for establishing and maintaining HBCRs, emphasising the importance of funding support for human resources, training programs, and digital infrastructure.

  • The development of standardised guidelines or protocols for HBCR management, including data collection, quality assurance, and interdepartmental coordination, is proposed.

  • Multidisciplinary collaboration among healthcare providers, including oncologists, physicians, nurses, and data clerks, should be promoted to ensure comprehensive and accurate data collection in HBCRs.

  • Healthcare organisations should be encouraged to prioritise digitalisation efforts and invest in technology infrastructure to streamline data management processes and improve registry efficiency.

5 Conclusion

This ethnographic study sheds light on the functionality, core processes, and sustainability factors of hospital-based cancer registries (HBCRs) in India. We identified critical elements necessary for establishing and maintaining the sustainability of the registry. The active involvement of oncologists and physicians, coupled with effective funding mechanisms and comprehensive training for registry staff, significantly contributes to the sustainability and accuracy of HBCRs. Interdepartmental coordination and digitalisation further enhance data management processes, ensuring the integrity and completeness of registry data.

Our findings underscore the importance of hospital policies, data quality assurance measures, and the engagement of key stakeholders, such as physicians and oncologists, in ensuring the longevity and effectiveness of cancer registries. Moving forward, it is imperative to continue exploring ways to strengthen registry operations and address any challenges that may arise, ultimately improving cancer surveillance efforts and patient outcomes in India.