| Literature DB >> 33495736 |
Javad Zarei1, Maryam Dastoorpoor2, Amir Jamshidnezhad1, Maria Cheraghi3, Abbas Sheikhtaheri4.
Abstract
Disease registry systems provide a strong information infrastructure for decision-making and research. The purpose of this study is to describe the implementation method and protocol of the COVID-19 registry in Khuzestan province, Iran. We established a steering committee and formulated the purposes of the registry. Then, based on reviewing the literature, and expert panels, the minimum data set, the data collection forms and the web-based software were developed. Data collection is done retrospectively through Hospital Information Systems, Medical Care Monitoring Center system (MCMC), Management of Communicable Disease Prevention and Control system (MCDPC) as well as, patients' records. For prospective data collection, the data collection forms are compiled with patients' medical records by the medical staff and are then entered into the registry system. We collect patients' administrative and demographic data, history and physical examinations, test and imaging results, disease progression, treatment, outcomes, and follow-ups of the confirmed and suspected inpatients and outpatients. From April 20 to December 5, 2020, the data of 4,812 confirmed cases and 7,113 suspected cases were collected from two COVID-19 referral hospitals. Based on our experience, recording information along with providing care for patients and putting patients' data registration in the medical staff's routine, structuring data, having a flexible technical team and rapid software development for multiple and continuous updates, automating data collection by connecting the registry to existing information systems and having different incentives, the registration process can be strengthened.Entities:
Keywords: COVID-19; Disease registry; Iran; Khuzestan; SARS-CoV-2
Year: 2021 PMID: 33495736 PMCID: PMC7816600 DOI: 10.1016/j.imu.2021.100520
Source DB: PubMed Journal: Inform Med Unlocked ISSN: 2352-9148
Fig. 1The governance of the Khuzestan COVID-19 registry.
Fig. 2Map of Khuzestan province and counties.
The specifications of two information systems of the Ministry of Health for recording and reporting of COVID-19 data.
| Health information system | Deputy in charge of system and place of recording and reporting of data | Data elements related to COVID-19 |
|---|---|---|
| Medical Care Monitoring Center system (MCMC) | Vice-Chancellor for Treatment | Patient identification data, Phone, and address,- Admission data, The name of the hospital, Early signs and symptoms of the disease, CT Scan, PaO2(Saturation, Underlying conditions, and comorbidity, COVID-19 test result, Intubation, Hospitalization in intensive care unit (ICU), Outcome, Date of discharge or death |
| Management of Communicable Disease Prevention and Control system (MCDPC) | Vice-Chancellor for Health | Patient identification data, Healthcare center identification data, Phone and address, Occupation, Direct contact with an infected person, Admission data, Signs and symptoms of the disease, Underlying conditions, and comorbidity- Covid19 screening result, drugs, Disease complications (Pneumonia and respiratory distress syndrome, Outcome, Date of discharge or death |
The main information sources used to design the data set.
| Information resources | Details |
|---|---|
| Articles | We searched PubMed and Google using the terms “COVID-19″ and “SARS-CoV-2″ to retrieve related articles |
| COVID-19 data collection and reporting forms | To retrieve COVID-19 data collection and reporting forms, we searched Google using the following terms in Persian and English: “COVID-19″, “SARS-COV-2″ and “Coronavirus disease” in combination with the terms “data collection form”, “data gathering form”, “minimum data set”, “data set”, “data dictionary”, “questionnaire” and “form”. Besides, we requested information from other hospitals, universities, or researchers in Iran for forms that were not available by Internet |
| Patient medical record | Some COVID-19 patients; medical records in one hospital in Ahvaz were reviewed. The structure and content (data elements) of paper-based forms of medical records and data recorded in these forms were considered |
| Health information systems | Content (data elements and their values) were examined in the following health information systems in Iran: MCMC system, MCDPC, SIB, HIS |
| Disease registry documents | Data sets, software, protocols and guidelines of other current registration systems in Ahvaz University of Medical Sciences were examined |
| Guidelines for other acute respiratory infections in Iran | The previous instructions and forms of the Ministry of Health of Iran were reviewed for other acute respiratory infections caused by corona viruses such as severe acute respiratory syndrome (SARS) and the Middle East respiratory syndrome (MERS), and Influenza |
Characteristics of participants in the expert panel.
| Demographic characteristics | Frequency | Percent | |
|---|---|---|---|
| Sex | Male | 5 | 50 |
| Female | 5 | 50 | |
| Education | PhD | 3 | 30 |
| Medical Specialist | 3 | 30 | |
| Fellowship | 4 | 40 | |
| Specialty | Pulmonology | 3 | 30 |
| Infectious disease | 1 | 10 | |
| Internal medicine | 1 | 10 | |
| Cardiology | 1 | 10 | |
| Health information management | 1 | 10 | |
| Epidemiology | 1 | 10 | |
| Laboratory Science | 1 | 10 | |
| Emergency medicine | 1 | 10 | |
Fig. 3The Login page of the COVID-19 registry software.
Fig. 4A sample screenshot of the COVID-19 registry software that shows the laboratory data section. The right panel of this figure shows the other groups of data such as demographics, encounter data, comorbidities, Chest X-ray, CT scan, EKG findings, outcomes, Follow-ups, ICD codes, medications, and attachments.
The data quality control measures in the COVID-19 registry system.
| The general approach to data quality control | Measures are taken to control the quality of data |
|---|---|
| Preventive actions | Developing a registry guideline for all staff Training registrars and data entry staff Using structured (coded) data in the registry software Using the patient's national ID as the unique identifier in the registry software Developing a data dictionary for the registry software Developing data validation rules and checks in software (including Data-type check, Simple range and constraint check, Cross-reference, and data consistency check) In the registry software, essential data were considered mandatory. Integrating patient data from different sources in the registry software Recruiting registrars from the staff of the same healthcare center participating in the registry Selecting one of the staff of each healthcare center as the supervisor of the registration program in the same center Establishing the data quality assessment and analysis committee for developing data quality guidelines |
| Detective actions | Comparing data obtained from a variety of sources and systems to identify and correct inconsistencies, missing data, and duplicate cases Continuous monitoring of data to identify abnormal and suspicious data, for example, unusual trend and frequency of registered cases from each participating centers |
| Corrective actions | Continuous correcting errors based on the results of detective controls, (such as completing missing data, editing inconsistencies, removing duplicates, etc.) Regular feedback to the relevant hospitals to correct the data |