Institutional Affiliated: Kuwait Healthcare

Introduction

Kuwait healthcare keeps in touch with cancer information from cancer cases encountered and subsequent fate of the patients. One of such pieces of information is the record of where cancer patients meet their death. Such places of where patients die to provide important information in the identification of care that should be given to dying patients. There is little-known information about the place of death (PoD) in Kuwait (Elbasmi et al. 2011).

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In 2009, Elbasmi et al. investigated on the places where people in Kuwait died. They went to the Kuwait Cancer Registry, where they reviewed death certificates submitted to them. The investigators found out that a total of 611 deaths were reported to the registry. Among the 611 cases on record, 603(98.7%) succumbed to death on hospital beds, and only 6(1%) died in their homes. A significant number of the hospital deaths, more than half (57.3%), were in K with precise Kuwait Cancer Control Center(KCCC). The patients who had a precise PoD in the health centres (484 cases), 24 %( 116) casualties died in ICU (intensive care units) while 2.5 %( 12) of the cases died in emergency care (Elbasmi et al. 2011).

Following the above conceptual framework of the information and communication system of the Kuwait cancer registry, it is crucial to identify various tools engineering and information technology tools in use to create an interconnected system. This part of creating the vision and system planning focuses on three functional areas namely the design, analysis as well as the control of large and complex systems. Among the tools used in system design is the concurrent engineering which can is a disciplined approach of overcoming the silos of responsibility and function allowing distinct units to understand the individual efforts and capabilities are optimized (Elbasmi&Fayaz, 2018).

These tools are used to develop the system flow chart which is as shown below.

The Kuwait cancer registry registration and scheduling of patients will occur at various units with distinct information systems across the registry(Elbasmi&Fayaz, 2018). The integration system is designed to enhance efficiency and ease the complex flow of work as well as resource management (Lapham,1992)

Similar to the National Program of Cancer Registries information systems get constructed for the management, collection, storage and data analysis on individuals who get diagnosed("Cancer Registry List," 2018). The cancer registries data collection involves demographics elements, tumour histology, outcome information, and treatment("Cancer Registry List," 2018). The NPCR framework comprises three types of cancer which include the facility-based registries(Elbasmi&Fayaz, 2018). Facility-based registries collect the diagnosed information about the patients treated on that particular level ("National and State Cancer Registries," 2018). Additionally, the specialty registries which receives the information on the type of cancer whether the brain tumours or the pediatric cancers among others and thirdly is the central cancer registries (CCRs) which collect the cancer patients geographic information ("IACR - Search," 2018). The collection of the cancer data and analysis is imperative although accurate and timely data makes a considerable difference (Elbasmi&Fayaz, 2018).

On the other hand, the Surveillance, Epidemiology and End Results integrates the information and communication technology into the operations, program management, dissemination and transmission of surveillance data(Elbasmi&Fayaz, 2018). Their system comprises of the software which improves the functions such as operations in the cancer registry, statistical data analysis as well as communications and collaboration with different organizations that facilitate the comparability and creation of cancer surveillance(Elbasmi&Fayaz, 2018).

The data standard of the Kuwait cancer registry is "documented agreements of representations, formats, and definitions of common data ("Public Access to Cancer Data," 2018)Data standards provide a method to codify invalid, meaningful, comprehensive and actionable ways, information captures in the course of cancer operations." ("CDC - National Program of Cancer Registries (NPCR)", 2018)The regulations and rules describe the recording of the data to make sure it is consistent all through different sources("IACR - Search," 2018). The Kuwait cancer registry ensures that data standards and the data quality are intact to ensure interoperability("IACR - Search," 2018). The Kuwait standards authority addresses a variety of issues in health informatics and information ("CDC - National Program of Cancer Registries (NPCR)," 2018). For instance, the Kuwait organization for materials and testing and the Health Level Seven (HL7) target the standards of the clinical data("IACR - Search," 2018). Accredited Standards Committee (ASC) X12 focuses on the standards of the insurance and remittances, while the standards for transmission of diagnostic images get created through the "Digital Imaging and Communications in Medicine" (DICOM) (Skeet, 1991). Additionally, concerning the data protection, the Kuwait cancer registry uses the AHIMA leadership model which works in a similar capacity to Structured Query Language which ensures that the data content gets identified, protected, understood and managed(Elbasmi&Fayaz, 2018).

In comparison to the standards of the SEER, the governing authority sets the rules. The standards reflect the organization needs which comprise the requirement of consistency. According to the SEER, registry collected data which lacks the capacity of the data standards contribute infinitesimally beyond the anecdotal data in cancer control and case management("Cancer Registry List," 2018). To ensure effective data standards and protection, the SEER advocates for different code structures but have some shared capacity of similarity("CDC - National Program of Cancer Registries (NPCR)," 2018). These include the node, the tumour and the metastasis and metastasis system which get updated with the advanced prognostic knowledge ("Public Access to Cancer Data," 2018). The summary codes classify the diseases localized, distant, regional and unstaged ("CDC - National Program of Cancer Registries (NPCR)," 2018) The code language is similar to every site and categories never change with cancer diagnosis advances (Elbasmi & Fayaz, 2018).

Regarding the data privacy, the Kuwait data confidentiality will get ensured through the following metrics which are in line with the Health Insurance Portability and Accountability Act (HIPAA) ("IACR - Search," 2018). The confidentiality agreement signing by all the staff members in the registry("Public Access to Cancer Data," 2018) The agreement sets the terms for the disclosure of the data to the third parties and also the authorities of the various facilities("National and State Cancer Registries," 2018). During the abstraction process, there will be no contact by the patient and the forms of the data abstractions will be kept in safe and secure place in the office of the registry("CDC - National Program of Cancer Registries (NPCR)," 2018). The registry will utilize the Canreg5 software which uses the electronic data management to manage the individual profiles(Elbasmi&Fayaz, 2018). However, the software access will be limited due to profile status of the patients and the staff members although supervisors will access the data comprising the summaries of the reports("Cancer Registry List," 2018). However, registrars have little access whereby they will have restrictions on the data entry ("IACR - Search," 2018). Additionally, there is personnel who will be responsible for the registry office but will be under the supervision of the registry director or manager ("IACR - Search," 2018). Registry Advisory board gets tasked with request assessment and the data approval ("IACR - Search," 2018). Furthermore, when the request needs to sent through the electronic devices, the data will be encrypted with passwords and sent separately through several emails ("IACR - Search," 2018).

This is in line with the National Program of Cancer Registries (NPCR) policy guidelines ("CDC - National Program of Cancer Registries (NPCR)," 2018). The guidelines and procedures for the data privacy and security standards are as the outline below. However, some factors facilitated the concern of the confidentiality which includes a high rate of laptops and National Institutes of Health (NIH) theft("IACR - Search," 2018). The devices are documents containing confidential patient identifiers databases, growing concerns over data security and the use of advanced technology that uses real-time encryption (Elbasmi&Fayaz, 2018). One of the primary data security is the privacy of confidential Dataflow ("SEER Training:Review: Cancer Registry Management," 2018). This flow of data occurs in various directions of the operations of cancer registry ("CDC - National Program of Cancer Registries (NPCR)," 2018). Therefore strong external flow of data (analytic files) and the internal data controls are practised to ensure confidentiality ("IACR - Search," 2018).

The Kuwait cancer registry system design is computerized for data validation and ease of access("CDC - How Cancer Registries Work - NPCR - Cancer," 2018). The cancer registration in Kuwait incorporates a computer program that validates the data generated and describes the resource outputs and inputs("IACR - Search," 2018). The factors that limit the system design in Kuwait are the inadequate computer facilities, meagre statistic, and less number of trained staffs ("CDC - National Program of Cancer Registries (NPCR)," 2018). The system and the computer programs that the Kuwait registry developed checks for the validity and reliability of different cancer diagnostic, therapeutic, and the outcome variables("IACR - Search," 2018). The program system will be in HIBASIC, CPM system of operation with an adaptable MS-DOS system, minimum of 64 GB memory, population-based data and will incorporate various chronic disease registries (Elbasmi&Fayaz, 2018).

Similarly, the Kuwait cancer registries resonate with the systems standards of the NPCR ("CDC - How Cancer Registries Work - NPCR - Cancer," 2018). The system requires the establishment of appropriate filtering of cancer data through various processes to give a vivid description of the data as well as statistical interpretations of the data ("IACR - Search," 2018). The system ascribed by the body should consist of software for analysis laboratory reports (eMaRC Plus)("IACR - Search," 2018). By interconnecting the computer systems to include all the units in the registry, the cancer registries bodies promote coordinated cancer information ("CDC - How Cancer Registries Work - NPCR - Cancer," 2018). The NPCR body is supported by the IHE which organizes the complaints and all the systems in the clinic(Anthony N. Nguyen, 2018). The profile of the IHE support the information network and is a requirement by the United States Human and Health services ("CDC - How Cancer Registries Work - NPCR - Cancer," 2018). However, the IHE provides the guidelines for registry information exchange and the definition of the use of that information (Nguyen, Moore, Dwyer & Philpot, 2018). The NPCR requires the cancer registries to develop a system, and the implementation process should be HER technology certified for meaningful use within the cancer registry ("Public Access to Cancer Data," 2018)

The annual report of Kuwait, unlike other the U.S NPCR and SEER reports, showed many cases of colorectal cancer ("IACR - Search," 2018). The frequency of thyroid cancer is high in the Kuwait cancer registry although the breast cancer in Kuwait had reported significant decreases. However, the lung cancer was the main cau...