The prevalence of breast cancer is one of the highest among this deadly disease around the world. The survival chances of patients depend on how early the patient has consulted an oncologist. Early detection can boost survival chances, as recommended by WHO. Breast cancer is categorised in various forms regarding their origin, grading, staging, and receptor status. When the prevalence is high, a fair assessment of stage at presentation is of vital importance.
A renowned professor of surgery at the Liaquat National Hospital, addressing the 56th Public Awareness Breast Cancer Seminar on 14th February 2020, said that 80 percent of women with breast cancer have no family history and about 77 percent of the women are above the age of 50 when diagnosed.
In Pakistan it is difficult to access data on a national level due to the unavailability of a national cancer registry. Researchers mostly obtain data from the hospital-based tumour based registry centres. Unfortunately, there is no concrete data available about the stage and age of the breast cancer presentation. In the absence of such data, a comprehensive health policy cannot be devised to address the problem.
The data collection techniques are manual, with higher probabilities of miscalculation and errors. Besides, it’s costly and time-consuming, mostly collected from past medical records and treatment of patients. If automated data capture systems are put into place, they prove to be cost-effective and time-saving. Once data has been generated electronically it will facilitate both doctors and patients. In a typical clinical setup, hospital performance is assessed by surgical audits performed on the primary data, whereas the secondary data serves the purpose of investigating breast cancer patterns, distribution, and determinants of the disease.
Multiple disciplines and departments are involved in making the diagnosis and treatment of typical breast cancer patients. Various doctors from different disciplines i.e., general surgeons, pathologists, radiologists and oncologists are involved in diagnosis and treatment. The crucial part for such disease management is proper data handling. Textual data has more chances of misinterpretation, therefore, computation collection of clinical data has greater significance. The electronic medical record (EMR) is a digital format of a systemised — collection of patients’ health data. It is gaining popularity for future medical research and practice. EMR is used in epidemiological analysis, in addition to clinical service evaluation.
Digitally managed records have opened ways and means for big data solutions. Research questions are answered with more proficiency. The extracted data from the data repository devises a new course of action for clinicians and researchers. In this case, artificial intelligence can also assist in detecting and managing data.
Data aggregation from different sources is of fundamental importance in health care. New health care regimes are introduced by extracting the hidden knowledge in patients’ data. The clinical research database features reinforce the data quality. The components needed for a successful clinical research database incorporate clinician engagement, integration of outdated computer systems, and the convenience of research.
The legacy system of collecting and storing data has been revolutionised by cutting edge computational technology and advanced informatics in medicine for computational research.
Maintaining a computational data repository is the need of the time for better medical services. Many countries have initiated EMR systems to manage enormous amounts of clinical data. These programmes included NHS care records service in the United Kingdom, National Programme For Information Technology (NPFIT), National Electronic Health Records (NEHR), Allscripts, EPIC, The Royal Children’s Hospital Electronic Medical Record in Melbourne, Care 360, OPTUMinsight, Mckesson, Nextgen, Eclinicalworks, Greenway in the USA. Malaysia is still in the budding stage of implementing electronic medical record and hospital information management systems.
Pakistan has a high rate of breast cancer and around 90,000 new cases are diagnosed every year. It is extremely important to take initiatives for digital data collection to address these critical health issues. The country needs a transition from manual records keeping towards incorporating emerging information and communication technologies in the health sector.
The Ministry of information technology and telecommunications (MOITT) has passed a bill for personal data protection in April 2020. The bill highlights guidelines for personal data collection, privacy, and security and introduces a fine of Rs.25 million for its unlawful possession.
The guidelines provided for personal data protection will enhance the collection of clinical information required for research. Automated data collection will help clinicians and researchers to educate a mass audience. Clinical research knowledge will facilitate the researcher, while the patient’s primary record is kept safe and secure. Clinical research knowledge base via de-identification of primary patient records prototype fulfills the international standard for data transfer; Health Level-7 standard (HL7), for clinical and administrative information.
The availability of consolidated, accurate, and compiled data can be ensured through an electronic national cancer registry platform, to control and create awareness of the disease with accurate statistical figures. Epidemiological research, health planning programmes, and patient care improvement are accelerated with digital data accessibility. For this, a holistic national-level system of cancer patient registration is imperative. The cancer data bank will assist clinicians and researchers in better understanding breast cancer and its prevalence and will help its treatment and prevention.
The Pakistan Health Research Council (PHRC) has been elected by the Ministry of national health systems resource centre (NHSRC) to form a cancer registry platform with the help of all major public and private hospitals. The hospitals that are part of the national cancer registry programme are Civil Hospital (Karachi), Jinnah Postgraduate Centre (Karachi), National Institute of Child Health (Karachi), Nishtar Hospital (Multan), Allied Hospital (Faisalabad), Bolan Hospital (Quetta), Khyber Teaching Hospital (Peshawar) and Armed Forces Institute of Pathology (Rawalpindi). These hospitals send their data to PHRC every quarter in mostly non-digital form. Resources are limited and data shared on an institutional level is still in its preliminary stage.
University Malaya medical centre in Malaysia has a system for electronic medical record, the i-pesakit system developed by the university’s department of information and technology. It has seven modules for patient management activities that include patient registration, inpatient, emergency medical visits, billing, folder tracking, and reporting. It has been operational since July 2012, and was further upgraded by the inclusion of clinical documents, orders, and results. This is a model for replacing the paper-based model of a patient’s record. The electronic medical record has further extended to clinical audits based on primary data obtained from the patient. They have incorporated organisational policies for handling digital data by developing solutions according to the personal data protection act.
Like Malaysia, Pakistan needs to involve stakeholders, academicians, students, departments of information and technology, and clinicians to make a proper document policy structure for the implementation of the electronic medical record system. Personal data with identification can be used with written permission obtained from the ethical committees or should be used under the personal data protection act.
The not-for-profit (Pink Pakistan) for data collection and EMR Pink Pakistan are putting efforts into facilitation, awareness, betterment, and enhancement of breast cancer patients’ outcomes. Pink Pakistan has initiated efforts in providing a platform for the country’s transition into an electronic health record registry, and the promotion of information technology usage in the health sector for the betterment of patients. To facilitate and promote this, a nationwide information system needs to be introduced by digital information structure expansion.
Digitisation of existing medical records, creating networks among public and private hospitals, diagnostic centres, clinics, and availability of concrete data about the stage and age of the breast cancer presentation, along with demographic information will aid in creating awareness programmes and lead to an evidence-based health policy formulation.
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