In celebration of World AIDS Day, we interviewed Section Editor Limin Mao, Associate Professor at the Centre for Social Research in Health…
PLOS ONE has an open Call for Papers on Cancer and Social Inequity, with selected submissions to be featured in an upcoming Collection. The aim is to bring together research that highlights the negative impacts of social inequities on health, identifies the effects of social and corporate policies on access to healthcare services, and proposes solutions to promote more equitable cancer outcomes and ultimately, social justice.
We are thrilled to be working with three distinguished researchers in this field as Guest Editors, who helped conceive this Call and will be curating the final Collection: Prof. Vesna Zadnik (Institute of Oncology, Ljubljana, Slovenia), Dr. Nixon Niyonzima (Uganda Cancer Institute, Kampala, Uganda), and Prof. Claudia Allemani (London School of Hygiene and Tropical Medicine, London, UK).
Technological and medical advances have improved cancer survival although the benefits have not trickled down to many developing countries. Social inequity has widened the gap in cancer outcomes between the rich and the poor. Tackling social inequity will significantly improve cancer survival for everyone regardless of socio-economic status. I am excited about this Collection and publishing in PLOS ONE allows easy access to science all over the world.Dr. Nixon Niyonzima
Prof. Allemani and Prof. Zadnik share their thoughts on why this topic is important, and their motivations for conducting research in this area.
How does social justice fit within the scope of cancer research?
CA: Universal access to healthcare, and in this particular context to cancer care, should be a human right everywhere in the world. Every cancer patient should have the chance for an early diagnosis and prompt access to optimal treatment, regardless of where they live or their socio-economic status.
VZ: Researchers in the field of cancer epidemiology and public health address challenges in the field of cancer control in a number of national and international research projects, the results of which enable experts and decision-makers to adopt and implement evidence-based programs at the level of primary, secondary, and tertiary cancer prevention. In recent years, a special focus has been given to research on socio-economic inequalities, which can be observed both within populations and globally.
Please tell us a bit about your current research and how it ties in with these issues?
CA: My main interests are world-wide comparisons of population-based survival trends, as indicators of the overall effectiveness of health systems in managing cancer (CONCORD program), patterns of care (VENUSCANCER), and on their impact on policy for cancer control. Differences in patterns of care and survival between countries are often driven by inequalities in access to care, due to the lack of life-saving treatment or to the lack of resources to access it.
VZ: I have co-edited the monograph Social environment and cancer in Europe: towards an evidence-based public health policy published by Springer this year. The monograph addresses the link between the social environment and cancer in Europe. It provides a comprehensive overview of social inequalities in oncology from prevention to survival, offers a comprehensive report of the burden of social inequalities in cancer in Europe, assesses the extent of social inequalities in cancer in Europe based on appropriate data and methodology, and takes an epidemiological approach towards an evidence-based public health policy in Europe for tackling social inequalities in cancer.
Further, I am active within the team that further methodologically develops the European Deprivation Index (EDI) for monitoring and understanding inequalities in health, which is also useful a tool outside of oncology and the healthcare system.
What are the biggest challenges to achieving equitable outcomes in cancer?
CA: To persuade policy-makers about the need to allocate adequate resources for cancer care, including not only adequate machinery (e.g. radiotherapy facilities), but also trained physicians, especially in low- and middle-income countries (LMICs), where infectious diseases still represent the main priority. COVID-19 has led to about 5 million deaths in two years, but about 18 million individuals are diagnosed with an invasive cancer every year, and about 10 million people die from cancer, again, every year: both numbers are increasing steadily. In addition, policy-makers should support cancer registries to enable routine surveillance of the effectiveness of the health system in managing cancer, and to create a registry for their country if they do not already have one. Without reliable information about inequities in cancer outcome, policy-makers are flying blind.
VZ: The main purpose of public health research in oncology is to provide integrated research and evidence-based cancer control. Completeness, reliability, and quality of data constitute the fundamentals in research. In cancer epidemiology, a major part of research is based on data about patients, their disease and treatment, that are collected by population-based cancer registries. Establishing and maintaining population-based cancer registries is essential, and should be supported by the efficient dissemination of results and their incorporation into the national politics (preferably through national cancer control programs).
How can open science contribute to overcoming these challenges?
CA: Open access, as currently mainly supported by Article Processing Charges (APCs), has fees that are not sustainable for researchers in LMICs. It is good that colleagues in LMICs can freely access more articles, but it would be better if they were able to share their local experience with the rest of the world.
VZ: This approach guarantees that new knowledge is made available immediately to the widest possible spectrum of readers. Still, publishing open access supported by APCs is the privilege of well financially supported research teams. In order to maximize the potential impact of the activities and results of the projects implemented by economically deprived researchers, new approaches are needed as well.
[Note from PLOS ONE staff: PLOS is establishing new business models beyond the APC to support more equitable and regionally appropriate ways for all authors to practice Open Access publishing. PLOS ONE offers alternatives to author fees through institutional partnerships. Our Global Participation Initiative and publication fee assistance program are also available to authors who lack publication fee support.]
How has the COVID-19 pandemic affected issues in cancer and social inequity?
CA: Patients affected by COVID-19 have had priority over patients affected by any other disease, including cancer. The long waiting list to access diagnosis, surgery, chemotherapy or radiotherapy will inevitably lead to a higher proportion of missed diagnoses, patients diagnosed at a late stage, and consequently to poorer outcomes. It has already been shown that people who were already struggling economically have been more affected by the pandemic, increasing the “cancer divide”.
VZ: The COVID-19 pandemic has disrupted the provision and use of healthcare services throughout the world. At several consecutive lockdowns all non-essential health care services were put on hold by a government’s decrees; cancer services were mainly listed as an exception. Nevertheless, cancer management depends also on other health services and additionally major changes in people’s behavior occurred – the effect on cancer diagnostics and treatment during the COVID-19 epidemic is already documented. A sharper fall in the number of referrals for oncological examinations and decrease in the number of diagnostic tests performed is projected for the socio-economically deprived population.
How do you see this field of research evolving in the future?
VZ: We have been aware for years that the burden of cancer to a large extent typically (but not exclusively) falls on the socio-economically deprived. Every year, many cancer patients throughout the world fall ill or die prematurely precisely because of the socio-economic inequalities in our society. Eliminating these inequalities is therefore going to be the focus of attention for specialists, decision-makers, and the general public for several additional years – researchers should be ready to support these decisions with firm evidence.
About our Guest Editors:
Prof. Vesna Zadnik is a public health specialist and a Doctor of Science in the field of cancer epidemiology. She is the Head of the Epidemiology and Cancer Registry Sector at the Institute of Oncology Ljubljana, Slovenia.
She directs and carries out detailed epidemiological analysis in order to elucidate a certain condition, e.g. cancer incidence, time series, spatial distribution, survival of cancer patients, efficiency of cancer screening programs, etc. Her special interest goes in explaining socio-economic inequalities in cancer burden.
Dr. Nixon Niyonzima is currently a cancer researcher at the Uganda Cancer Institute where he heads research and training. Dr. Niyonzima is also the laboratory director of the laboratories at the Uganda Cancer Institute where he is working to improve access to cancer diagnostics. He is an investigator on several studies on the molecular characterization of cancers in Sub-Saharan Africa (SSA) and development of affordable low-cost diagnostics for diagnosis and prognostication of cancers in resource-limited settings. He is also involved in several initiatives to build health system capacity for cancer care in Uganda.
Dr. Niyonzima qualified as a medical doctor from Makerere University and graduated with a Master of Science in Global Health from Duke University. He did his doctoral studies in Cell and Molecular Biology from the University of Washington before returning to work and undertake cancer research at the Uganda Cancer Institute.
Prof. Claudia Allemani is Professor of Global Public Health at LSHTM. Her main interests are in international comparisons of cancer survival (EUROCARE, HAEMACARE, CONCORD), “high-resolution” studies on patterns of care and short-, medium-, and long-term survival, as well as the estimation of avoidable premature deaths, with a focus on their impact on cancer policy. She has 20 years’ experience in this domain. She is co-Principal Investigator of the CONCORD program for the global surveillance of cancer survival and Principal Investigator of a prestigious European Research Council Consolidator grant to carry out a world-wide study on inequalities in survival from cancers of the breast, cervix, and ovary (VENUSCANCER).
She has published over 150 peer-reviewed articles and 10 book chapters, manuals and reports. Her research has been cited over 13,000 times (h-index 51, i-10 index 76; Google Scholar). She collaborates with the Organisation for Economic Co-operation and Development (OECD) and with several other international agencies, including the International Atomic Energy Agency (IAEA), the World Health Organisation (WHO), the US Centers for Disease Control and Prevention (CDC), the American Cancer Society (ACS), and the French National Cancer Institute (INCa), as well as the European Cancer Patient Coalition (ECPC).
Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS.
Researchers are encouraged to submit their research to the PLOS ONE Call for Papers on Cancer and Social Inequity by February 22nd 2022.