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Challenges in the maintenance of an open hospital-based cancer registry system in a low-to-middle-income country (LMIC): 2017–2022 experience [1]
['Beatrice Tiangco', 'Cancer Care Registry', 'Research Philippines Foundation', 'Inc', 'Pasig', 'University Of The Philippines National Institutes Of Health', 'Manila', 'Shanaia Esthelle Joy Daguit', 'Nicole Cathlene Astrologo', 'University Of The Philippines Los Baños']
Date: 2024-02
Hospital-based cancer registries (HBCRs) record data on all patients diagnosed and/or treated for cancer at healthcare facilities and evaluate the burden of the disease and the quality of healthcare services at that hospital, helping improve patient care, and providing an assessment of healthcare quality. The CARE PH app was created as a tool to facilitate a system of hospital-based cancer registries in the Philippines, a lower middle-income country. From 2017 to 2022, a total of 60,021 cancer registrants from 44 CARE PH hospitals were entered into the database. Breast cancer was the most common primary site, accounting for 17,660 cases (29.4%). This was followed by colorectal cancer at 11.1%, cervical cancer at 6.2%, head and neck cancer at 5.9%, and prostate and other male genital cancer at 5.1%.Among the 30 data fields collected, 17 exhibited 0–20% missing data, eight displayed 21%-90% missing data, while five depicted 91%-100% missing data. Most of the data fields with missing data are in the treatment and follow-up modules, which are stored in separate forms in a patient’s record. Digital transformation of hospitals from paper-based charts to electronic medical records, and the integration of the HBCR to the EMR and hospital information system, will likely be the best solution for these limitations. It is recommended that the creation and maintenance of HBCRs nationwide must be harmonized, and embedded in all relevant national programs and legislations. The development of an information technology process that is based on a cancer patient’s journey, should be built on an open system embedded in a well designed enterprise architecture, functioning under the guidance of a strong leadership and governance team. All these must be present in order to create and maintain a robust HBCR that is useful for furthering cancer registry and research in the country.
This is a proof-of-concept paper on the challenges in the maintenance of an open disease- specific registry. It tells the story of a hospital-based cancer registry system—its people, process and technology components, the real-life experience of its creation, and the challenges met on the ground, given the required data fields of the registry and the limitations of the current landscape in information technology in a low-to-middle income country (LMIC). The lessons learned are useful as we work towards the global United Nations Sustainable Development Goal of Good Health and Wellbeing by the year 2030, and the local government programs of universal healthcare and cancer control by 2030.
Funding: CARE PH, through BJT, received funding for the initial establishment of the HBCR app from the Philippine Society of Medical Oncology (no grant number) (
https://psmo.org.ph/ ), the Philippine College of Physicians (no grant number) (
https://pcp.org.ph/ ), and the Philam Foundation through the ALPHA 1 Project (
https://www.aia.com.ph/en ). LAC is funded by the National Institute of Health through NIBIB R01 EB017205 (
https://www.nih.gov/ ). The sponsors did not play any role in the study design, data collection and analysis, decision to publish and preparation of the manuscript.
Copyright: © 2024 Tiangco et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
This is a follow-up paper on the Creation and Maintenance of a Hospital-Based Cancer Registry (HBCR) System [ 11 ]. The objective of this study is to describe the researchers’ experience in implementing the Cancer CARE Registry and Research Philippines’ (CARE PH) Hospital-based Cancer Registry (HBCR) System in the six years since it started data gathering.
Although the benefits of implementing an HBCR have been evidenced, it has been observed that its success over time requires interest from the institution, engagement of stakeholders, and financial support. Ethnic variations and environmental influences also make incidence of cancer variable across different populations, hence making it mandatory to have patient databases in every hospital, so that region specific data may be created and policies formulated.
In the Philippines, a lower middle-income country with a population of 109 million, 69.4 million of which are in the 15–64 working age group [ 8 ], there is still no centralized population-based cancer registry, but rather separate PBCRs led by local government units in different provinces such as the Department of Health-Rizal Cancer Registry (DOH-RCR), Philippine Cancer Society-Manila Cancer Registry (PCS-MCR), Cebu Cancer Registry (CCR) and Davao Cancer Registry (DCR) [ 5 ]. These PBCRs utilize an active method of data collection, to provide information used as the basis for most cancer prevention programs and activities of the Department of Health [ 9 ], but these do not often include clinical data, thus limiting the assessment of important variables, such as accuracy of diagnosis, quality of treatment, demand for health services, among others [ 10 ].
Several countries have already established HBCRs, including Japan with 397 HBCRs [ 5 ] which provide evidence for clinical measurements and create more accurate health policies for its population. HBCRs have also been established in low- and middle-income countries such as Colombia [ 6 ] and Nigeria which has 19 HBCRs [ 7 ]. These registries have been useful in improving cancer programs, providing a better understanding of the region’s response capability against cancer, and giving an optimal coverage of cancer data. Such strategies are important in low- to middle-income countries with weak surveillance systems and scarce financial, human, and infrastructural resources for cancer management and control [ 4 – 7 ].
A systematic review of hospital based cancer registries (HBCRs) conducted in 2017 noted that HBCRs are mostly used for management of cancer programs and improving quality of care. Other functions include epidemiological and clinical research, education, policy making, evaluation of implantation of clinical practice guidelines, planning and monitoring of cancer control programs, including prevention, screening, treatment, and palliative care. HBCRs remain an important resource for planning and monitoring of cancer control programs, as they play a role in the improvement of quality of care of cancer patients [ 4 ].
On the other hand, hospital-based cancer registries (HBCRs) record data on all patients diagnosed and/or treated for cancer at a particular healthcare facility and evaluate the burden of the disease and the quality of healthcare services at that hospital. The primary focus is on improving patient care at that hospital, as well as on administrative processes, clinical research, and professional education [ 1 , 2 ]. HBCRs are used mainly to provide an assessment of patients’ needs, cancer programs, and health care quality within a health institution [ 3 ].
A cancer registry is an information system or database designed for the collection, storage, and management of cancer data from a specified population, which gives its end-users a snapshot of the real-world cancer burden [ 1 ]. Although cancer registries were originally used to calculate rates of incidence, and compare risk of various cancers in different populations, developments have helped them evolve to include studies of cancer cause and prevention. Collected registry data now also serve as a primary resource for epidemiological, causality, feasibility and effectivity research, as well as provide critical information needed in planning and evaluating cancer prevention and control interventions [ 1 – 3 ]. There are two major types of cancer registries: population-based registries, and hospital-based registries [ 1 ]. Population-based cancer registries (PBCRs) record all cases in a geographically defined population from multiple sources and measure the impact of the disease in specific demographics such as age, gender, etc. PBCRs are designed to determine cancer patterns and trends, guide health policies in surveillance, control and funding, as well as advance clinical, epidemiological, and health services research [ 3 ].
Methodology
Implementation and building a database CARE Philippines (CARE PH) started out as a software tool created in a collaboration between a practicing Medical Oncologist and Epidemiologist, and a Health Information Technology specialist through consultations with different stakeholders such the Department of Health (DOH) Knowledge Management and Information Technology Service (DOH-KMITS), hospital cancer committees, cancer specialists, and cancer researchers, for gathering demographic and clinical information to help the Department of Health determine incidence of disease and prioritize public health activities. It has since evolved into a loose organization of hospitals (CARE PH Hospitals) and their registry staff that use the CARE PH app for their hospital cancer registry. Each hospital has the CARE PH app embedded into their local area network, kept secure by the hospital IT department or tumor registry office; it has a capacity to share anonymized data with a secure central database. The summary data from all participating hospitals is published in yearly reports presented to the member hospitals, and is also made available in the organization website (
https://careph.org).
Ethics statement and data privacy The CARE PH HBCR System complies with the Philippine government’s Data Privacy Act of 2012 and was piloted in 2015 at the National Kidney and Transplant Institute (NKTI), a government-owned specialty hospital, and at The Medical City Pasig (TMC), a privately-owned tertiary hospital. CARE PH first submitted its proposal to these hospitals’ ethics regulatory boards which then approved the protocol and informed consent process. Formal written consent was obtained from patients enrolled from the first two hospitals. Subsequent hospital members and their medical directors signed memorandums of agreement with CARE PH where the hospital agreed to use the CARE PH app as their hospital cancer registry and share their anonymized and encrypted cancer registry data with the central CARE PH database which collected only summarized and de-identified registry data. At the hospital level, all patients need to be informed that the hospital maintains a cancer registry database that contains personal information about those diagnosed with and or treated for cancer within the hospital. With the passing of Republic Act No. 11215 –the National Integrated Cancer Control Act (NICCA) in 2019 [12], adult and childhood cancers were considered as a notifiable disease in all levels of the healthcare system and required to be reported to the Department of Health. Cancer patients can opt out of the registry by putting in writing their opt out preference, signing and dating such written statements.
Population and hospital membership Over the past six years, CARE PH has established Memoranda of Agreement with a total of 44 hospitals with cancer centers, 10 of which are newly onboarded in 2022, as demonstrated in Table 1. Among these, 37 are categorized as tertiary hospitals, five as secondary hospitals, one as a primary care hospital, and one as a standalone cancer center. Geographically, nine of these hospitals are located within the National Capital Region (NCR), while 19 are situated in Luzon (outside NCR), eight in the Visayas, and another eight in Mindanao. Furthermore, the distribution indicates that 15 of these hospitals operate under government management, while 29 are privately owned. PPT PowerPoint slide
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TIFF original image Download: Table 1. List of CARE PH hospitals with corresponding level and type of service and bed capacity.
https://doi.org/10.1371/journal.pdig.0000328.t001 One of the biggest contributing hospital members is the Philippine General Hospital, the National University Hospital, and the national government referral center, which serves more than 600,000 patients from all over the country every year [13]. Ten of the DOH designated cancer care centers (DCCC) are also members of the CARE PH HBCR system including National Kidney and Transplant Institute, East Avenue Medical Center, Bicol Medical Center, Vicente Soto Memorial Medical Center, Western Visayas Medical Center, Batangas Medical Center, Bicol Regional Teaching and Training Hospital, Zamboanga City Medical Center, Northern Mindanao Medical Center and Cotabato Regional and Medical Center [14]. All member hospitals have the following services: pathology, clinical laboratory, diagnostic imaging, hematology, oncology, surgical oncology, chemotherapy, but not all might have radiotherapy. It is notable that only four of the 44 hospitals have a functioning EMR, and most still rely on paper-based charts separate from laboratory information systems (LIS). The CARE PH HBCR System started functioning in July 2017 and its database includes patients with diagnosed cancer from January 13, 2017.
Case definition All patients of any age and sex, seen in any hospital part of the CARE PH System or in hospital-affiliated oncology clinics, who have a clear basis for the diagnosis of cancer are included in the registry. Cancer patients undergoing any treatment modality, including palliative care, for the said disease are also included. The main basis for diagnosis is the pathology report of the diagnostic biopsy. In cancers like germ cell tumors where clinical diagnosis using biomarkers, or hepatocellular cancer where imaging of the liver of patients with risk factors like hepatitis B or C, surgical pathology or cytology reports are not needed for diagnosis of cancer and the patient is still entered into the cancer registry.
Staffing and training Comprising a Tumor Registry Office in each CARE PH hospital is at least one Doctor Champion, and at least one Tumor Registrar, who are full-time employees of the hospital voluntarily contributing to the local cancer database. The Doctor Champion is an oncologist or general physician who consults regarding the important dates in the patient’s cancer journey and helps the tumor registrar in deciding when the patient was diagnosed, relapsed, progressed, etc., as well as how to categorize the patient’s malignancy. The Tumor Registrar, any hospital staff with a background in healthcare chosen by the Doctor Champion, is trained in Good Clinical Practice and data entry into the cancer registry app and also makes rounds to the different catchment areas within the hospital to collect information and regularly shares the hospital cancer registry data with the central database. Newly onboarded hospitals in the CARE PH HBCR System undergo a one-day training conducted by CARE PH Registry staff, introducing the application to both the Doctor Champion and Tumor Registrar, and are given a training manual which includes step-by-step instructions for encoding and data collection.
Data sources The cancer patient journey typically begins with the diagnosis of cancer based on a biopsy report generated in a hospital’s Pathology department. It is worth noting that in the Philippines, patients often receive care in more than one hospital during their cancer journey. Once a cancer diagnosis is confirmed, comprehensive staging procedures, such as radiological imaging and serum biomarker assessments, are conducted to evaluate the extent of the disease and predict its progression. Following this, the diagnosis is typically communicated by an attending oncologist who discusses treatment options, which are made after reaching consensus in a collaborative consultation involving a multidisciplinary healthcare team or hospital tumor board. Evidence-based surgical, radiation, or pharmaceutical interventions are then initiated and continued in a strategic manner with cure, extension of life, or quality of life as outcomes of interest. Given this overview, catchment areas were identified within each member hospital, including: (1) Records Section, (2) the Pathology Department, (3) Specialty Out-Patient Clinics for cancers such as Germ-Cell Tumors, Liver Cancers, and Brain Cancers which do not need tissue biopsies for clinicians to diagnose and treat as cancer, and (4) Radiation and Chemotherapy Clinics for patients diagnosed in a different hospital, but sought treatment at a CARE PH hospital.
Data collection The hospital tumor registrar goes to all the catchment areas, gathers the patients’ identification numbers, and manually enters information into the hospital cancer registry on a regular basis. The data fields are distributed into the following modules: Hospital Information, Patient Data, Cancer Data, Cancer Treatment Intervention, and Patient Current Status Data. The data fields collect both standardized data through pre-selected drop-down options (i.e. primary site, diagnostic coding, staging, status) and free text data, where appropriate (i.e. CARE PH registry number, Patient Identification Number (PIN), imaging or pathology reports). Cancer diagnostic coding is done according to the International Classification of Diseases for Oncology, third edition (ICD-O-3) [15], and the staging is done using the American Joint Committee on Cancer, eighth edition (AJCC 8th) [16]. Only the tumor registrar and select hospital staff who have been properly trained on data entry, handling and security are given usernames and passwords to access the database. Fig 1 illustrates the flow of data, mapping the cancer patient’s journey to the entry points of data gathering from the catchment areas to the CARE PH web application, then on to the central CARE PH database. Once member hospitals have completed data collection from their respective sites, data is uploaded to CARE PH central servers on a weekly or monthly basis. The data entered and stored in the local area network includes patient identifiers, but the data shared with the central CARE PH database is encrypted, anonymized and de-identified, where patients are referred to only with a CARE PH registry ID bearing patient initials and birthdate. Registrants in the central database with the same initials, birthdate and primary site but entered into the database by different CARE PH hospitals are red-flagged by the central CARE PH app. These two entries are assumed to be the same patient who transferred from one CARE PH hospital to another, and the number of such entries are presented in the annual report. PPT PowerPoint slide
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TIFF original image Download: Fig 1. CARE PH Hospital Cancer Registry Catchment areas and data flow.
https://doi.org/10.1371/journal.pdig.0000328.g001 After enrollment to the registry, the patient status is checked by the doctor champion and tumor registrar every 6 months or less, if there is any noted status change such as remission, recurrence, relapse or death. Data regarding follow-up status is recorded in the follow-up status and clinical outcome module.
Quality control and maintenance There is no standard method for quality control of information for the HBCR. Practices per hospital may vary, with the doctor champion reviewing the information recorded, verifying consistency of data and checking for possible errors in encoding and tumor identification and classification. At the central database level, the CARE PH team works on performing checks to ensure collection of authentic and valid data, as well as checking for possible duplicates. Regular backups of data are done to ensure no data loss. Backed up data is downloaded and stored in a separate local server and storage device.
Yearly review and reporting The yearly report includes a consolidated cancer census that looks at the total number of new registrants, top primary sites for the entire HBCR system and a breakdown per hospital. Age distributions per primary site and top 10 primary sites per age group are also analyzed.
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