Yvonne Walburga: Journeys across oceans
The Open Bioinformatics Foundation (OBF) Event Fellowship program aims to promote diverse participation at events promoting open-source bioinformatics software development and open science practices in the biological research community. Dr Yvonne Joko Walburga, a Post-doc at the University of Cambridge, was awarded an OBF Event Fellowship to attend the African Organisation for Research and Training in Cancer (AORTIC) Cancer Conference.
I initially applied for the OBF Travel Fellowship to attend the African Organisation for Research and Training in Cancer (AORTIC) Genomics Conference, and was accepted, but the timing was too tight. Happily, the board agreed to defer my funding to the next AORTIC Conference in November 2023 instead. So, I could make it for the AORTIC conference in Dakar, Senegal from November 2nd – 6th 2023 with support from the OBF Travel Fellowship and the African Cancer Registry Network.
And what a conference it was!
This was the third in-person AORTIC conference I have had the opportunity to present at. At this AORTIC conference, I was invited to give two oral presentations on work we had done during my PhD with the African Cancer Registry Network (https://www.afcrn.org), at the University of Oxford, under the supervision of Prof. Max Parkin and Dr Paul McGale.
It was an opportunity to give back and report on the work carried out by the registrars, who meticulously collect data on cancer incidence across sub-Saharan Africa. The AFCRN works with cancer registrars across the continent to harmonise the data collection, building capacity for robust data collection and analysis, and on how to use the CanReg5 software. CanReg5 is a freely accessible open-source tool that is used to input, store, quality check and analyse cancer registration data. (http://www.iacr.com.fr/index.php?option=com_content&view=article&id=9:canreg5&catid=68&Itemid=445). This generated data is used by national cancer control programs and by the International Agency for Research on Cancer (IARC) for the GLOBOCAN data reports https://gco.iarc.fr/today/home.
The first day of the conference (November 2nd, 2023) gave me the opportunity to join the satellite meeting of the Network for Oncology Research in Africa (NORA) consortium and to listen to and contribute to ideas on how we could collaborate and build partnerships for cancer surveillance and genomics research in sub-Saharan Africa.
Following the NORA session, the organisers of the NORA consortium carved out time at the end of the session to visit the Island of Gorée. In typing Gorée, my English word editor quickly underlines it; curious as to what suggestions it would give me, I let my mouse hover.. it suggested “Gore” which means “Blood, Stab, Violence”. The Gorée Island is unspeakably beautiful; however, within its beauty, along its shores and especially at the “Door of No Return” – “Porte du Voyage sans Retour”, we must grapple with our shared history – that of slavery and its consequences – and also of a history stripped with Gore – blood, stabs and violence. As a post-doctoral researcher in cancer epidemiology who is now exploring population-level cancer genomics – I constantly think about the consequences of our shared ancestry with African- Americans, the immigrants from the Caribbean to the United Kingdom, and the Africans living on our beautiful African continent. However, there is such under-representation of this vast continent with very diverse populations, and in the era of personalised medicine and personalised risk reduction, we would widen health inequities if we do not improve access to progress in genomics to under-represented populations.
Figure 1: The “Door of No Return”/ “Porte du Voyage Sans Retour”, Gorée, Senegal
My first oral abstract presentation on November 4th, 2023, was on “Cancer Survival in sub-Saharan Africa”. In this work, we described the population-level cancer survival outcomes of more than 10,000 sub-Saharan African patients with 18 different cancer types. This work was done with data from the African Cancer Registry Network, and in collaboration with the International Agency for Research on Cancer (IARC) and Vital Strategies. We highlighted the disparities in access to care and diagnostics for patients with cancers in sub-Saharan Africa and the resultant disastrous health outcomes. This work would not have been possible without working alongside the cancer registrars to improve the quality and representation of population-level cancer survival data, via the use of the open source CanReg5 software developed by IARC.
Figure 2: Oral presentation at the African Organisation for Research and Training in Cancer Meeting, Dakar 2023
My second oral presentation was part of the African Cancer Registry’s Network session on “Cancer Surveillance in sub-Saharan Africa” on November 5th, 2023. In this session, I gave a talk on the “Incidence trends, stage and survival from breast cancer in sub-Saharan Africa”, the subject of my doctoral thesis. Studying trends in cancer incidence requires the availability of good quality data spanning several years. This was possible for 12 sub-Saharan African countries, largely thanks to the work of the AFCRN, on improving data coverage for cancer surveillance in Sub-Saharan Africa.
Figure 3: Presenters at the session on “Cancer Surveillance in sub-Saharan Africa”, hosted by the African Cancer Registry Network (AFCRN) at the African Organisation for Research on Cancer Conference (AORTIC), Dakar, Senegal.
From left to right: Myself (Dr.Yvonne Joko Walburga), Dr. Mazvita Sengayi (Head of Department, National Cancer Registry South Africa), Prof. Cesaltina Lorenzoni (Pathologist, Head of the National Cancer Control Program at the Mozambican Ministry of Health and President-Elect – African Organisation for Research and Training in Cancer), Ms Biying Liu (Administrator of the AFCRN), Ms Lydia Businge (Rwanda Cancer Registry), Prof Max Parkin (Coordinator of the African Cancer Registry Network) and Dr. Muluken Gizaw (Assistant Professor, Addis Ababa University)
I also had the opportunity to present an abstract titled “Systematic Review of Breast Cancer Risk Factors in sub-Saharan Africa” during the poster sessions. This enabled me to meet with, and discuss with researchers across the continent on how we could build collaborations to ensure more robust studies are conducted on the burden of risk factors pertinent to our context and to explore unique gene-environmental interactions.
This AORTIC conference was my first post PhD, and during which I strongly felt that, the onus is on us to drive the change we want to see in terms of research, mentoring and collaboration. We are of the generation who can return to the land they could never return to. We must answer the questions that are pertinent to our continent, and we must leverage the power of our networks, our teams, and leap-frogs in technology to generate the data necessary to answer our health challenges. However, I know it is not an easy task; in a continent with a history of exploitation, how do we ensure that sharing our data brings the greatest good for all involved? Yet, as a continent, in spite of its history, we are known for our generosity, for being our brother’s keeper, and for the concept of “Ubuntu”. Thus, I strongly believe that together, we would find ways of tapping into what unites us, to carry out and share the benefits of our research on the African continent with those who need it most, and to help close the gaps of equity in access to quality healthcare.
Finally, reflecting on this journey I made to Senegal, and on all the journeys we make across all types of boundaries and oceans, we must remember, we are never really alone, we are carried by the love and support of our families, by the encouragement of our mentors and advisers, and by the courage of those who went before us.
This just shows that data is of paramount importance for any health venture that drives positive change. Thank you.
Good job Dr Wally. The importance of accurate & timely data gathering cannot be overemphasised. We cannot manage what we do not measure.