The Challenges of Paper-Based Patient Data Management in Uganda

Following the paper trail of patient data : –

At the end of every month at the hospital where I work in Kampala, Uganda, I, like every other doctor at the hospital, am responsible for conducting routine Morbidity and Mortality (MM) audits. This is a review of all patients admitted to the unit in that month, including the reason for their admission, and the percentages of those who lived and those who died. This audit provides vital analysis on disease trends as well as the causes of death to inform policy changes for improved care. While these stats are exciting, the process of compiling this data is daunting.

The doctors charged with preparation of the month`s audit usually begin their journey in the records store, a vintage building with poor lighting at the far end of the hospital complex adjacent to the mortuary.

Files of papers are piled together, in stashes tied with sisal ropes organized in units, which are defined by the date of admission of the patients. Files from all departments – as long as the people were admitted on the same day – are kept together in one mound. The store is arranged supermarket style, and strolling through the walkways with cobwebs and silence is reminiscent of a haunted mansion scene from a horror movie.

The far end of the building looks undisturbed with thick layers of dust, as the files from the 80s and 90s have not been touched in a long while. Painstakingly the doctors review stack after stack for the whole month, filling in Excel sheets and later analyzing the data to generate indices like mortality rate, number of deaths in the first 24 hours, and common reasons for hospitalization as well as causes of death.

Sifting through the stacks for patient care : –

The most important record we have is the Patient Chart, which is a booklet containing the detailed story of a person and their illness. This is the way data is recorded and stored; in these booklets. Doctors record detailed notes and personal details, including the symptoms that brought the patient to the hospital in the first place, past medical history, and also a social history to help make a diagnosis.

This is usually followed by a full body examination, and then a doctor makes a tentative diagnosis and starts emergency treatment while awaiting confirmatory results from imaging or the laboratory. A patient is then followed up on the ward daily, monitoring progress until the patient improves, goes home, gets worse or dies.

For patients who spend a long time in hospital, sometimes up to 3 or 4 booklets will be used. This is a lot of data, most of which is largely inaccessible. This data is property of the hospital and is not freely sharable with the patient or their primary caregivers, save for small summaries on discharge forms that the patient or attendant can leave the hospital with.

Most hospitals in Sub-Saharan Africa still use these paper records of their patients. Even the summaries sent to their Ministries of Health are in a hard paper form. A few hospitals have started digitizing sections of their health data, but the road to paperless medical data system remains riddled with encumbrances.

By Dr. John B. Niwagaba





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