Run a search on “breast cancer and Rwanda” on PubMed and you will find just 19 documents. Search for “breast cancer and United States,” and you will get close to 70,000 documents. Granted, Rwanda has only 12 million inhabitants and the US has more than 300 million, but even a search for “breast cancer and Africa” yields only about 2,300 documents.
Based on these numbers, you might suppose that breast cancer is less of a problem in Rwanda or Africa as a whole than in the US, but the opposite is true. Breast cancer mortality rates in Africa exceed those in the US, even though its incidence in Africa is less than half what it is in the US.
Why so little research, then? Or is that really the case? The answer is complex, and it’s not specific to breast cancer research. Part of the problem is not that research doesn’t get done but that it doesn’t always get noticed. Thankfully, the African Journal Partnership Program (AJPP), in collaboration with the Elsevier Foundation’s Research Without Borders program, is working to address both the paucity of African research and its visibility.
This summer, I spent two weeks as an Elsevier Foundation volunteer at the Rwanda Journal of Medicine and Health Sciences in Kigali. While there, I saw first-hand that important research is in fact being published in Africa, but it doesn’t always make it to the global — or even the local — stage. So I set out to change that, if only with one example.
The Rwanda Journal of Medicine and Health Sciences (RJMHS) is one of 10 medical journals throughout Africa that participate in the AJPP program, whose mission is to “promote wider dissemination of African health and medical research published in African health and medical journals.” The AJPP, in conjunction with the Elsevier Foundation, sends editors, publishers and other staff from leading publishers, including the New England Journal of Medicine, JAMA, The BMJ and Elsevier’s The Lancet, to serve as mentors to their African counterparts.
While I do not work in traditional journal publishing, I have held a number of editorial positions throughout my career, and I am trained as a neuroscientist, so I have published in the peer-reviewed literature. What’s more, I have written about science and medicine for a variety of news outlets, including The New York Times, The Boston Globe and Scientific American. This meant that I felt comfortable going to Kigali with the aim of supporting the dissemination mission.
I proposed bridging a connection between the RJMHS and the journalism community in Kigali – something the journal editors had not yet tried to do.
Well before I left for Rwanda, I reviewed the May issue of RJMHS and identified a study with evergreen potential that could serve as a peg for a much larger story on breast cancer. If the journal published a newer study while I was in Africa, I could shift focus to that, but for now, I had a concrete study to work with.
Then Ylann Schemm, Director of the Elsevier Foundation, put me in touch with Ochieng' Ogodo, Sub-Saharan Africa Regional Coordinator for SciDev.Net, a global news site that is working to promote strong, independent journalism throughout the developing world. With his help and that of his network, I acquired a short list of journalists covering science and medicine in Kigali.
Ogodo recognizes that one of the fundamental challenges in making scientific information reach wider sections of the society in Rwanda and most parts of Africa is the lack of systematic dissemination strategies. As he explained: “This is what makes the Elsevier Foundation and AJPP’s deliberate engagement with journalists like me an excellent approach that will go a long way in ensuring that the general public is well informed in easy-to-understand language about research taking place on many scientific fronts.”
Thanks in large part to the efforts of the Elsevier volunteer who preceded me, Jasmin Bakker, RJMHS had made the issue available on a new website she helped them create. This meant we could point journalists directly to the site, where they could not only download the study but also see the other content coming out of the journal.
The breast cancer study, which involved the use of a previously validated survey, found that a convenience sample of participants in the Kigali breast cancer walk had limited knowledge of the signs and symptoms of breast cancer — despite their selection bias. Only about half of women (54 percent) and even fewer men (41 percent), knew that a lump in the breast could signal cancer. What’s more, the majority of respondents (70 percent) did not know that the lump could be painless, and very few people knew about the other signs and symptoms of breast cancer.
This lack of awareness among Rwandans is important because screening mammography is not available in Rwanda, and women in sub-Saharan Africa are diagnosed with breast cancer at a much younger age (in their 40s and 50s) and with more aggressive and later stage tumors than women in other parts of the world. What’s more, women throughout Africa often delay in seeking treatment, which greatly diminishes their chances of survival.
I drafted a press release based on the study with help from Dr. Jean Bosco Gahutu, Editor-in-Chief of the RJMHS and the study’s senior author, Dr. Pamela Meharry, Professor of Nursing at the University of Rwanda, in partnership with the University of Illinois, Chicago. Dr. Gahutu then circulated the press release to the journalists, along with an invitation to a press conference on the topic.
Because it is not sound journalistic practice to cover a single study, and journalists must put new findings into a societal and scientific context, the press conference covered the larger issue of breast cancer in Rwanda.
Speakers included Dr. Gahutu, who introduced the journal and its mission; Dr. Meharry, who explained the mechanics, findings and limitations of the study; and Cheryl Mutabazi, a breast cancer survivor and board member of the Breast Cancer Initiative East Africa (BCIEA). Mutabazi shared her personal narrative as a breast cancer survivor and detailed the services provided by the BCIEA, such as the provision of breast prostheses (see photo on right), called “knitted knockers.”
Also presenting at the press conference was Dr. Ainhoa Costas Chavarri, a general surgeon who practices at the Rwandan Military Hospital, is affiliated with Women in Surgery Africa, and is an Instructor in Surgery at Harvard Medical School. Dr. Costas Chavarri discussed her experience treating breast cancer in Rwanda and shared the news that the hospital has just installed a first-in-country radiation therapy unit, though it was not yet operational. This is momentous because only 23 out of 52 African countries have radiation therapy available, and women with breast cancer cannot undergo breast-sparing surgery without it.
Several journalists attended the conference, including television personality and chair of the Rwanda Association of Science Journalists (RASJ) Patrick Nyiridandi. The event was covered on Rwanda Television, the Journal du Cameroun, WhatsApp (a much-used social media platform in Africa), and likely other publications, but in Kinyarwanda (the dominant language spoken in Rwanda), making them difficult to find.
In addition to journalists, we invited members of the research community as well as representatives from the Ministry of Health, which is important, because findings in the journal could merit attention when shaping local policy.
“The AJPP program and the Elsevier Foundation’s Research without Borders program gave voice to a small research project, which might have gone unnoticed,” said Mutabazi, “but the findings are critical in identifying a key factor in prevention. The press conference was certainly effective in shining a light on the research as an important contribution to the issue of breast cancer in this country.”
AJPP and the Elsevier Foundation’s Research without Borders
Launched in 2004, the African Journal Partnership Program (AJPP) provides long term-mentoring collaborations between 10 African Journals: African Health Sciences, Annales Africaines de Medecine, Annals of African Surgery, Ethiopian Journal of Health Sciences, Ghana Medical Journal, Malawi Medical Journal, Mali Médical, Rwanda Journal of Health Sciences, Sierra Leone Journal of Biomedical Research and, most recently, The Health Press Zambia. Mentor journals include JAMA, The Annals of Internal Medicine, BMJ, The New England Journal of Medicine, Environmental Health Perspectives and The Lancet.
The Elsevier Foundation joined the partnership in 2016 to provide additional volunteer training. Ylann Schemm, Director of the Elsevier Foundation, explained: “Given our longstanding commitment to research capacity building, we were very impressed with the deep partnership support and AJPP Editors’ ambition to develop robust national and regional health journals. It struck us as a win-win and a perfect way to offer skills-based volunteering, involving Elsevier colleagues who are passionate about research and development.”
- The partnership offers a training complement to AJPP’s mentoring program. The Elsevier Foundation has contributed $204,000 over three years to cover volunteer participation, training needs and travel grants.
- Since 2017, 35 volunteers have contributed a total of 84 weeks of time, sharing expertise in publishing, marketing, operations and technology.
- Two Amsterdam and Paris workshops for the francophone journals of Mali and Democratic Republic of Congo took place in 2017 and 2018.
- Volunteers work in-country for one to four weeks.
- Together with the African journals, AJPP directors, mentors and volunteers, the training needs of the journals, their milestones and challenges are assessed each year.