Behind the Paper

Not Just Numbers: The Human Story Behind COVGEN’s Data Collection

Behind every clinical cohort are stories that never appear in a table. This post reflects on the people and moments behind COVGEN's data collection, from adapting research protocols during the COVID-19 pandemic to building a resource shaped by patients, families, healthcare workers, and researchers.

Every morning began at 3:30 a.m.

I still remember setting multiple alarms because those extra few minutes of sleep could make a difference. By 4:00 a.m., a fellow research assistant and I would leave our temporary accommodation and walk toward the university hospital where we conducted the COVGEN cohort study.

Kuala Lumpur was unusually quiet at that hour. The city that was normally filled with traffic and noise felt almost suspended in time. The streets were empty, and the humid air hung heavily around us. We would only put on our personal protective equipment (PPE) after reaching the ward preparation room, making that short walk the last ordinary moment before entering the COVID-19 wards.

When I joined The Malaysian Cohort, it was my first job in a university research setting. Like many early-career researchers, I expected to gradually develop my skills by learning from experienced colleagues and academic leaders.

COVID-19 changed that trajectory.

During the establishment of the COVGEN cohort study, I was entrusted with a new responsibility as a research officer and field team lead. Together with a dedicated team of research assistants, clinicians, nurses, and investigators, we recruited hospitalized COVID-19 patients and collected the clinical information and biological samples that would become the foundation of this research resource.

Looking back, I realize how fortunate I was to have worked under the leadership of Prof. Rahman Jamal and the mentorship of our project manager, Mr. Arman. Their trust in a young researcher shaped both my career and my understanding of what clinical research truly means.

Our mornings soon settled into a routine. One of our first tasks each day was to find the patients we had recruited. Carrying our alcohol-misted folders from ward to ward, we checked with the nursing teams for updates. 

"Is this patient still in this bed?"

"Has this patient been transferred?"

"Can we continue their follow-up sampling?"

We always hoped the answer would be yes – not only because our study required follow-up samples, but because it meant the patient was still receiving care and fighting the disease.

During the Delta wave, however, patient conditions could change rapidly. Sometimes, nurses informed us that a participant had been transferred to intensive care. Other times, they quietly told us that a patient had passed away overnight.

The nurses delivered these updates with remarkable professionalism. For our team, however, these moments carried a different weight.

An empty hospital bed was not just a missing data point.

 It represented a person, a family, and a life affected by COVID-19.

The realities of the wards extended beyond patient care. After hours spent tracking patients, obtaining consent, collecting samples, and updating recruitment records, we shifted our attention to data management and administrative work.

Each day ended with a debrief led by Mr. Arman. We reviewed recruitment progress, shared challenges from the wards, and continually refined our workflow to improve recruitment, sample transfer, and data collection. Those conversations also acknowledged something many of us quietly carried: the concern that we might bring the virus home to our families after working in the COVID-19 wards.

One challenge quickly became apparent. Our protocol relied on patients – or, when necessary, their next of kin – to complete detailed questionnaires covering medical history and existing health conditions before sample collection. However, many patients were severely fatigued, receiving oxygen support, or medically unstable. Some were unable to complete the questionnaires or provide detailed medical histories.

Together, our team adapted. When direct interviews and self-completed questionnaires were not possible, we reconstructed baseline clinical profiles through careful review of medical records, extracting relevant clinical information, including medical histories and clinical measurements.

This experience changed how I view research. Rigorous science is not only about following a carefully designed protocol, but also about recognizing when reality changes and adapting thoughtfully while preserving the integrity of the research.

Between those parts of the day, I developed a small routine. 

After removing my PPE, cleaning myself, and completing the daily recruitment updates, I would walk to the hospital's convenience store for breakfast and coffee. I rarely remember what food I bought, but I still remember my Nira Melaka Latte.

That coffee became a small moment of normality, a brief pause between the intensity of the clinical wards and the quieter hours spent organizing the data collected only a few hours earlier. 

Years later, when I look at the (recently!) published paper, most readers will naturally see the number 2,406 – the number of participants enrolled in the COVGEN cohort.

But behind that number, I see something very different.

 I see the early morning walks to the hospital, the folders carried from ward to ward, the conversations at nursing stations, colleagues who supported one another, nurses who guided us through rapidly changing patient conditions, patients and families who placed their trust in us, and the investigators whose vision made COVGEN possible.

Upon reflection, what I value most is not simply the responsibility I was given during the pandemic, but the opportunity to contribute to a collective effort. Building COVGEN required adaptation, collaboration, and trust. It was made possible by patients who participated, families who shared information during difficult circumstances, healthcare workers who supported research alongside clinical care, and researchers who worked together to preserve valuable scientific data.

Every sample collected and every row in the database represent much more than measurements. They represent the collective effort, resilience, and humanity that made the science possible.

COVGEN Research Articles

Acknowledgement
I would like to thank Prof. Rahman Jamal and Mr. Arman for reviewing and helping improve drafts of this article, and for generously sharing photographs for the post.