EACR member Khalid El Bairi discusses how the intricate landscape of ovarian cancer patient records reveals significant challenges, from missing data to deficiencies in surgical reporting.
Ovarian cancer, a highly lethal and aggressive malignancy that affects women, continues to pose a significant global health challenge despite therapeutic advancements observed in the past decade. While substantial progress in both research and treatment has led to improved outcomes in many countries, under-resourced settings still encounter multiple challenges in various facets of ovarian oncology. Our project depicted in recent papers we published1-3 has highlighted the considerable neglect of this gynecological cancer. Notably, our study has exposed a critical issue: missing data!
Missing data poses substantial barriers when addressing research questions related to cancer in real-world settings4. Their repercussions can have detrimental effects on scientific progress, particularly in countries struggling to conduct high-quality data-generating prospective studies. The presence of missing data reflects an aspect of research inequality. It highlights disparities between well- and under-resourced regions globally, contributing to the already existing gap in knowledge and resources related to ovarian cancer research, which varies in its burden across different regions.
Several years ago, during my medical training, I initiated the OVANORDEST project (OVAire dans le NORD-EST; Ovarian cancer in the North-East of Morocco)2. Back then, my aspiration was to gather data on ovarian cancer and develop prognostic and predictive models tailored to under-resourced settings, marking a first in Morocco. Our study, which aimed to address long-awaited research questions, had immense potential. However, missing data rendered our project incomplete. Although the early findings were interesting, I encountered challenges in obtaining an adequate sample size for key variables in our multivariable regression analysis. The absence of a significant proportion of crucial patients’ information was an important limitation of our collected data.
Surgery is a cornerstone in the management of patients with ovarian cancer. Surgeons who have been involved in the diagnosis and treatment of these patients played pivotal roles in enhancing their survival and quality of life. However, upon reviewing their reports on diagnostic laparotomy and debulking procedures, it was often observed that these reports were neither comprehensible nor did they contain the standardised information that should be included in every report. This deficiency has had a profound and adverse impact on the quality of the collected variables. Ultimately, the failure to account for surgical data in multivariable regression has undoubtedly led to the development of imprecise predictive models for survival. Additionally, important information on staging, biomarkers at baseline, treatment protocols and reported toxicities as well as adequate follow up were missing from patients’ archives included in our study. The absence of data is not solely a consequence of insufficient resources in these settings but is also attributed to the lack of motivation among many clinicians.
The issue of missing data underscores the urgent need for solutions to mitigate the negative consequences on research published by scientists practicing in low- and middle-income countries where patients’ data are not collected routinely. Indeed, enhancing data collection procedures in cancer hospitals by standardizing medical records may reduce the occurrence of missing data. Lack of enthusiasm for research during the clinical career of medical doctors may also discourage them from collecting data during diagnosis, treatment, and follow-up of patients. Therefore, early exposure to research methodology during medical training should be implemented within the medical education curriculum, particularly in medical schools located in regions plagued by these issues. It is also advisable to foster collaborative relationships with well-equipped institutions in similar countries that faced similar challenges to facilitate the adoption of electronic medical records and share their experiences. Additionally, the development of affordable IT solutions to support hospitals to prospectively collect data may also contribute to enhancing the completeness and accuracy of patient records.
Ovarian cancer should be considered as a notifiable disease by healthcare authorities to build regional-based cancer registries, survival databases, and biobanks to support clinical and translational research. Involving the community, particularly advocacy groups, to motivate patients to keep their appointments, adhere better to their treatment schedules, and offer precise updates on their health could enhance the completeness of medical records. In the modern era of oncology, data have become gold with massive value and potential. This highlights the critical importance of a holistic approach to data collection and management to enhance cancer care.
About the author
Khalid El Bairi, @elbairikhalid19 on X (Twitter). I am a medical doctor and an EACR member from Morocco. My research focuses particularly on affordable prognostic and predictive biomarkers for ovarian cancer. I am highly interested in teaching evidence-based medicine, clinical research methods, science integrity, and publishing ethics to medical and PhD students and I was selected for the 72nd Lindau Nobel Laureate Meeting as a young scientist. I am also involved in “global oncology” initiatives through providing free training to young researchers across low- and middle-income countries. My long-term research goals involve becoming an independent researcher in the field of ovarian oncology to develop precision medicine-based approaches for managing ovarian cancer in under-resourced settings as a part of my new fellowship in my new institution of affiliation.
References
- El Bairi K, Al Jarroudi O, Afqir S. The OVANORDEST project: making an impact on ovarian cancer in Morocco. Int J Gynecol Cancer. 2023 Dec 4;33(12):1970-1971. doi: 10.1136/ijgc-2023-004892.
- El Bairi K, Al Jarroudi O, Afqir S. Ovarian cancer in Morocco: Time to act is now. Gynecol Oncol Rep. 2021 Sep 3;37:100857. doi: 10.1016/j.gore.2021.100857.
- El Bairi K, Al Jarroudi O, Afqir S. Tracing ovarian cancer research in Morocco: A bibliometric analysis. Gynecol Oncol Rep. 2021 May 7;37:100777. doi: 10.1016/j.gore.2021.100777.
- Yang DX, Miccio JA, Jairam V, et al. The Impact of Missing/Incomplete Data in Real-World Data Studies. Int J Radiat Oncol Biol Phys 2020;108:e394. 10.1016/j.ijrobp.2020.07.2432.
Competing interests: I report receiving fees and honorariums from NCODA, Techspert, Elsevier and Springer and funding from the Cancer Research Institute (Morocco) during the last five years.
Acknowledgement: I acknowledge the use of DALL·E to build the figure associated with this paper.
