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Data Collection

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Collecting patient-level data in a geographically dispersed setting requires considerable coordination to ensure completeness, accuracy, and timely transmission of the data as well as limiting the burden on participants and healthcare providers.

Electronic medical records systems allow the use of transparent decision algorithms and improved data entry and data integrity. These systems may improve data transfer to the central office and provide tracking systems for monitoring the patient care process.

The Electronic data collection systems can be availed to the service delivery points through several options, which may include notebook computers, handheld tablets, Personal Computers (PCs), Personal Digital Assistants (PDAs).

Several approaches have also been employed in capturing the data elements into the electronic medical records systems. In some instances, data is collected on paper and verified then data clerks transcribe this into the electronic platform after some time. This may happen after the patient has already left the clinic.

There are several advantages of the retrospective data entry approach. The caregiver can review many patients in a short while since paper record data collection is not tied to other technological factors like the availability of the internet or personalized computers.

Another challenge retrospective data collection solves is the limited typing skills of the healthcare worker. As long as the paper forms are printed out and available for use, the caregiver can review patients and document the data on the paper forms. The papers are then forwarded to the health records officer for data entry in the medical records system.

On the flip side of things, this approach has several disadvantages. It is very difficult to follow the skip patterns on paper forms since there are no internally restricting rules binding the caregiver to fill in the required data fields. This may introduce missing data.

Additionally, the caregiver’s handwriting may sometimes be hard to read. The use of short notes and abbreviated words may be a hindrance to the transcription process even when data is properly filled. These challenges in turn have ripple effects on the reports generated from this data.

International Cancer Institute has overcome this challenge by developing an electronic medical records system (e-ICI) based on the Open MRS. e-ICI complements the Ministry of Health in collecting Cancer Patients’ level data in real-time.

Demographic, clinical care, socio-economic, diagnostic data are collected during the patient’s visit at the care center and documented straight into the electronic medical records system by the caregiver who has pre-qualified access rights.

Responses are pre-coded for ease of selection and to trigger the appropriate response for each question. There are no transcription errors as the data is entered in real-time. The built-in rules for skip patterns ensure all the required fields for patient care are well captured. The caregiver can then generate an accurate report at the end of the patient’s visit and share it with the policymakers for informed decision-making.