Applying Health Literacy Principles to Your Research – Advice From PLOS ONE Academic Editor Opeyemi Babatunde

In our final instalment for Health Literacy Month, PLOS ONE Academic Editor Dr. Opeyemi Babatunde provides advice on how you can apply health literacy principles to your own research.

Dr. Opeyemi Babatunde is based at Keele’s School of Medicine as a Senior Lecturer in Evidence Synthesis and Applied Health Research, where she supports production of evidence synthesis across a broad research remit including musculoskeletal, multimorbidity and comorbid long-term conditions.

Dr. Babatunde’s research expertise includes evidence synthesis, implementation science, knowledge mobilization, qualitative and quantitative research methods, and patient and public involvement in health research. She also works with Keele’s Impact Accelerator Unit and the Global Health Institute to improve the dissemination of evidence outputs to patients and the public, and to support mobilization of research knowledge into practice nationally in the UK, and internationally in low-and middle-income settings. She is currently leading West-Africa’s first guideline informed implementation project to improve care for osteoarthritis: JIGSAW-Africa project. She is also leading the establishment of The West-African Institute for Applied Health Research (WAFERs) to encourage interdisciplinary/intersectoral collaborative working and enable indigenous researchers to undertake full spectrum of applied health research as a critical infrastructure for evidence-informed practice in low resource settings.

Dr. Babatunde serves a number of research funding committees and holds membership of implementation and advocacy working groups internationally. She is a member of the UK Knowledge Mobilisation Alliance and Health Literacy UK. Dr. Babatunde is an editorial board member of PLOS ONE and BMC Musculoskeletal Disorders. Her research has been published in various high impact scientific journals and she is a co-applicant on a number of grants funded by the National Institute for Health Research (NIHR) funding streams.

For me, the golden rule is to ask, who are the users of this research? Where or how might they go to find information about this health issue, and what is the most natural way to get health information filtered through to them even when they are not actively seeking it? For each of these questions, I find answers from representatives of people to whom the research relates and follow their lead!

How did you become interested in health literacy?
My first interest in health literacy was not with the term “health literacy” per se but born out of my day-to-day encounters with patients from a wide variety of socio-economic backgrounds during my training and early career as a Physiotherapist in Africa. In such settings I dealt a lot with musculoskeletal pain and other long-term conditions, which often necessitate patient participation in their own care for best outcomes.

It didn’t take long to figure out that patients who had little understanding of the health information being given to them, and the services we offer as physiotherapists, often engage less with their care plans; they also had worse outcomes and often became trapped in a vicious cycle of ill-health, seeking help in and out of the healthcare systems. Of course, in such settings, paternalism in healthcare and cultural norms also played a role, such that people who had education and would be considered literate were not necessarily health literate.

Image by Drazen Zigic on Freepik

I have been fortunate to work alongside and learn from the best in this field including Prof. Joanne Protheroe, who was Chair of Health Literacy UK group, and has done a lot of work conducting research into the impact of low health literacy on health outcomes, raised awareness, as well as paved the way for clinicians to consider the health literacy of their patients in exploring their needs and putting in place effective care plans. Low health literacy widens inequalities and there is a mammoth amount of work needed to address these issues on a global scale, and especially in low- or middle-income countries (LMICs) where simple health literacy interventions could be the difference between life and death for many!

Ultimately, with many global health systems under pressure (across high-income countries and LMICs), and increasing prevalence of multiple long-term conditions among populations generally, self-management will become the cornerstone of care. The ability of patients to know how to access, understand, and make use of services and information to promote and maintain their health is becoming indispensable!

You are also interested in patient and public involvement in research. Can you tell us a little more about that?
Patient and Public Involvement and Engagement (PPIE) in the research process has a great history in the UK, contributing to improved relevance, legitimacy, and validity of research findings. Mechanisms for doing this have also improved over the years. Keele University’s Impact Accelerator Unit, led by Prof. Krysia Dziedzic, is at the forefront of PPIE research as well as public involvement in knowledge mobilisation. Fundamental results of public contributions to the research process include added perspective, broader capture, and prioritization of the public’s needs. However, of uttermost concern is that there appears to be a systematic non-capture of prioritized needs of certain sections of society, further widening inequalities.

Image by yanalya on Freepik

It is natural and expected that public contributors will bring to the table immediate needs and priorities of themselves and those in their circles and networks. What has been inadvertently left out are needs that are not in any way represented by those who are traditionally at the table. These are seldom heard voices and groups. Research cannot truly be of public benefit if it cannot benefit the diversity of the patient base, or if it can potentially harm segments of the population that have been systematically excluded from it. In all honesty, I believe there is a certain level of increasing awareness about this. However, as things evolve, avoiding tokenistic involvement from seldom heard groups is an ethical issue and will be crucial for true collaborative contributions of public to research, and reducing the widened inequality gaps in health and care outcomes.

As with health literacy, I am also interested in pragmatic approaches to improving patient and public contribution to research in LMICs.

Research cannot truly be of public benefit if it cannot benefit the diversity of the patient base, or if it can potentially harm segments of the population that have been systematically excluded from it.

What can researchers do to apply health literacy principles to the design and conduct of clinical studies?
I believe every step in the research cycle—from planning/design, to recruitment, informed consent process, participant retention, data provision and collection, reporting and dissemination—can be enhanced through consideration of health literacy principles. The obvious basics include using plain language, consideration for numeracy, use of graphics, images, and unambiguous design to enhance visualization of information and clear navigation through the research process. There are a plethora of published tools and techniques that can be used to integrate health literacy into clinical research (e.g. However, the true test of any application of these principles is enhanced participation, as represented by the diversity base of the respective patient population. We must also note that depending on the field and the research question, researchers will at different times need to make consideration for different patient participant groups. As such, there is no one size fits all approach.

Continuously in the research cycle or career journeys, the target goal for the researcher should be to enhance research participation for everyone irrespective of health literacy levels. This is because patients’ capacity and skill to navigate complex health systems and health information may be further stretched under certain health situations. It may be helpful to consider multi-layer presentation of evidence, with consideration for health literacy at all levels. Underpinning this, is the critical need for individual and collective sense of ownership of the responsibility to enhance research participation for everyone. Everyone involved in the research cycle from funders to principal investigators, research administrators, patient and public contributors, clinicians, and all stakeholders should be conscious of accessibility of research with regards to health literacy.

Image by on Freepik

PLOS ONE promotes alternative measures of impact beyond citation counting. How important is the dissemination of research to patients and the public?
In an ideal world, research is primarily for patient benefit. Even though health professionals and the healthcare organizations are responsible for direct use of evidence in guiding patient care, it is a moral right, and it makes every sense, to ensure that every research finding is accessible to the public. As researchers, we are trying but our best isn’t yet enough. Apparently, there is a natural tendency to prioritize citation counting and publication in high impact journals over dissemination to the public due to the current system of assessing impact and academic career. I suppose incentivizing dissemination of research to patients and the public in some way other than academic publications may accelerate targeted sharing of research evidence across a broad stakeholder community. This may be controversial, but it may just help in changing the current narrative and culture of over-prioritization of citation count on research articles.

How can researchers disseminate their research findings more widely?
As in the words of John le Carré, a former British MI5 and MI6 agent, “A desk is a dangerous place from which to watch the world.” For me, the golden rule is to ask, who are the users of this research? Where or how might they go to find information about this health issue, and what is the most natural way to get health information filtered through to them even when they are not actively seeking it? For each of these questions, I find answers from representatives of people to whom the research relates and follow their lead!

Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS

This concludes our series for Health Literacy Month. However, if you would like to continue the conversation and are attending the European Public Health Conference this November, please come and say hello to staff editor Marianne Clemence!

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Health Literacy and Infectious Diseases: Interview with PLOS ONE Academic Editor Enrique Castro-Sanchez

To continue our series on health literacy, this week we interview PLOS ONE Academic Editor Dr. Enrique Castro-Sanchez, who tells us about the importance of health literacy in infectious diseases research, and the benefits of Open Science.

Dr. Enrique Castro-Sanchez is the Senior Lecturer in Planetary Health at the BASc Global Challenges programme at Brunel University London (UK), a position he combines with an honorary lectureship at Imperial College London (UK), and visiting posts at University of Balearic Islands (Spain), and Shifa university (Pakistan).

His clinical experience focuses on infections, infection control, and antimicrobial stewardship. From 2012-20 he was Lead Nurse for Research at the NIHR Health Protection Research Unit in Healthcare-Associated Infection and Antimicrobial Resistance at Imperial College London. In 2016, Enrique was selected as Emerging Leader in International Infectious Diseases, and in 2017 he worked as Consultant for the World Health Organization developing leadership education for national leaders. That year, he was also appointed as one of the 70 NIHR 70@70 Senior Nurse Research Leaders to increase research capacity for nurses in the national health service in England.

He received an MSc Public Health from the London School of Hygiene and Tropical Medicine, and completed his PhD in 2015. Enrique has gained funding from NIHR, AHRC, ESRC, BRC, with research in UK, Pakistan, India, Rwanda, South Africa, Mexico, Chile, Argentina, and Spain. He is Editor-in-Chief of Infection Ecology and Epidemiology journal, and holds editorial positions in PLOS ONE, JAC-AMR, BMC Public Health, and BMC Health Services Research.

Image by Drazen Zigic on Freepik

Please tell us a little bit about your research, and how it relates to health literacy.
My research focuses on how people (healthcare workers, patients, citizens, policymakers) make decisions about antibiotics, infections, and infection control. I have always been interested in communication and how to best inform different audiences about these topics. Despite its importance, health literacy has not traditionally been the focus of attention for those working in infectious diseases, with many gaps identified by some of my work.

The WHO has identified antimicrobial resistance as one of the top 10 global public health threats facing humanity. How can health literacy research address this threat?
Health literacy research can significantly contribute towards interventions to improve how antimicrobials are used by healthcare professionals, patients, and citizens, and help policymakers to support such interventions. For example, at a fundamental level, it is vital to identify the knowledge and skills that people need and have so they can make informed decisions about antibiotics and their use. The evidence from this research would help us clinicians and public health workers to then develop appropriate educational interventions that can increase the understanding of the population about infections, antibiotics, antibiotic resistance, and so on. We could improve the communication skills of healthcare workers, to make information about antibiotics and infections more accessible and easier to understand for patients, and even some national agencies could improve how they communicate with the population (see some work we did on Ebola here).

We lack evidence about most effective interventions for improving health literacy among those populations typically left behind, ostracized, and marginalized by health and social care services as well as public health systems

Also, health literacy can contribute towards the understanding of the underlying factors that influence behaviors related to antibiotic use. Recognizing these behaviors, together with the barriers and facilitators to using antibiotics appropriately, would allow us once again to develop effective interventions. For example, people are more likely to use antibiotics inappropriately if they have low health literacy, if they are under pressure from family or friends to take antibiotics, or if they believe that antibiotics are always the best way to treat infections (which would not be the case in viral infections like a cold, for example), so we can address these social and cultural factors that influence antibiotic use.

One of your interests is the relationship between health literacy and health inequalities. What are the most important research questions in this area?
Yes, I am particularly interested in this relationship, which is a complex one. Emerging work using holistic conceptualization of health literacy includes a powerful component of equity. We need to have a solid understanding of the mediating role of health literacy between social determinants of health and health outcomes. These social determinants (for example, poverty, education, ethnic group, etc.) are known to play a major role in health inequalities. Health literacy may help to explain how social determinants of health influence health outcomes.

Image by Freepik

Also, we lack evidence about most effective interventions for improving health literacy among those populations typically left behind, ostracized, and marginalized by health and social care services as well as public health systems. Data about any of these interventions should strive to include evidence on sustainability, and implementation.

The COVID-19 pandemic has had a hugely disruptive impact on society. How has it changed the landscape of health literacy research?
Absolutely, the pandemic has been hugely and suddenly disruptive, and it would have been surprising if health literacy research and work had been free from such disruption. The pandemic has highlighted the importance of health literacy in several ways. For example, we have seen how people with low health literacy were more likely to experience poorer clinical and health outcomes. This situation should not have been really a surprise, considering the relation between socioeconomic position and COVID-19 infection and disease, and the interplay between this position and health literacy. An example connecting health literacy and COVID-19 may have been that people with low health literacy would likely have more difficulty understanding and following public health and self-care guidelines, leading to admission to hospital and death from COVID-19. The pandemic has disproportionately affected groups of people left behind and marginalized, which are more likely to have low health literacy. I feel that globally, more work could have been carried out by national and international agencies to ensure that these groups were adequately supported.

Image by Freepik

The pandemic has also shown how essential health literacy is for effective public health communication. Public health and government officers faced the challenge of communicating complex and rapidly changing information to a wide range of audiences. Health literacy research can help inform the development of communication strategies that are accessible and understandable to everyone. Disinformation and misinformation have appeared as crucial challenges to explore and address.

What kind of health literacy research would you be most excited to read about as an Editor for PLOS ONE?
I would love PLOS ONE to publish multidisciplinary papers offering insights on the development and evaluations of interventions for populations left behind, and studies exploring the intersection of health literacy and social determinants of health. I would also be delighted to read experiences using large language models and chatbots as part of health literacy interventions. Finally, it would be great to see reports of co-design and co-development between researchers and populations focused on health literacy.

In terms of Open Science, it is imperative to make research accessible and transparent to everyone

How can health literacy principles be applied when authors share the results of their research, and what is the role of Open Science?
Authors can profit from health literacy principles to engage with the public and citizens, as well as researchers from other disciplines, and policymakers. They can adopt approaches such as using clear and concise sentences, avoiding unnecessary and obscure terms, and striving to use plain language. There is a good debate going on about ‘antimicrobial resistance’, for example, and whether ‘drug-resistant infections’ may be a better term. Authors could also increase their efforts to explain the implications of their research, and what it may mean for citizens and society’s wellbeing, or the implications for public policy or clinical practice.

In terms of Open Science, it is imperative to make research accessible and transparent to everyone. I often think that the research community, with research and salaries routinely funded by the taxpayer, could do more to ensure citizens can see and learn about our work, methods, and findings. It may help dispel myths about the evidence we use to decide what to do in case of a pandemic, for example. Open Science initiatives contribute to that benefit.

Disclaimer: Views expressed by contributors are solely those of individual contributors, and not necessarily those of PLOS

Keep reading next week for research highlights on health literacy and cancer.

Castro-Sanchez E, Chang PWS, Vila-Candel, R, Escobedo AA (2016) Health literacy and infectious diseases: why does it matter? Int J Infect Dis. 43:103-110.
Castro-Sanchez E, Spanoudakis E, Holmes AH (2015) Readability of Ebola Information on Websites of Public Health Agencies, United States, United Kingdom, Canada, Australia, and Europe. Emerg Infect Dis. 21(7):1217-9
Cabellos-Garcia AC, Castro-Sanchez E, Martinez-Sabater A, Diaz-Herrera MA, Ocana-Ortiz A, Juarez-Vela R, Gea-Callero V (2020) Relationship between Determinants of Health, Equity, and Dimensions of Health Literacy in Patients with Cardiovascular Disease. Int. J. Environ. Res. Public Health 17(6), 2082
Hange N, Agoli AM, Pormento MKL, Sharma A, Somagutta MR, Paikkattil N, et al. (2022) Impact of COVID-19 response on public health literacy and communication. Health Promot Perspect. 12(1): 1-9

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How Health Literacy Research Can Address Health Disparities

October is Health Literacy Month. To celebrate, we will be posting a series of research highlights and interviews discussing health literacy research and practices throughout the month.

Health literacy relates to people’s knowledge of issues relating to their health and well-being, as well as their ability to increase their understanding. It impacts patient access to healthcare, understanding of health conditions, and practice of lifestyle factors that may prevent health conditions from arising in the first place. Fundamentally, health literacy not only empowers people to take an active role in managing their own health, but can also enable them to participate in social initiatives to improve global health.

Differences in health literacy also impact on health disparities, and equity of experience in healthcare systems. As part of PLOS’ commitment to Diversity, Equity and Inclusion, we aim to increase the publication of research that studies inequalities, racism, and inequities facing minority or marginalized populations. Therefore, PLOS ONE is excited to serve as an Open Science platform for the publication of health literacy research that is immediately available to the widest possible audience.

We have a number of Editorial Board Members with expertise in health literacy ready to assess your research; watch out for our upcoming interviews later this month with Dr. Enrique Castro-Sanchez (Brunel University London) and Dr. Opeyemi Babatunde (University of Keele), who will be discussing health literacy at PLOS ONE, and their own research on this topic.

This week, we are revisiting five articles recently published in PLOS ONE that touch on different aspects of health literacy research. They range in scope from improving young people’s knowledge of mental health issues to assessing people’s ability to understand graphs, but they are united in emphasizing the importance of health literacy for improving health and achieving equitable outcomes.

Are graphs harder for some patients to understand than tables?

StockSnap, Pixabay

Data visualization is a hot topic, and scientists are keen to find innovative graphical methods to present complex information effectively. However, Durand and colleagues point out that there is limited research about graph literacy among people with lower education and socioeconomic status. Using a cross-sectional survey, they found that graph literacy scores were low among 436 people in the US on Medicaid, and that comprehension scores were actually slightly higher for tables than bar graphs and icon arrays. These findings have important potential implications for how clinicians and public health organizations communicate health information to patients.

Health literacy is not just important for physical health

victoruzihben, Pixabay

There is increasing recognition of the importance of mental health for overall health and wellbeing. Mental health literacy interventions can help improve recognition, to support help-seeking and management of mental illness. In this study, Jumbe and colleagues describe findings from focus group discussions with young people in Malawi. The study forms part of an initiative to inform cultural adaptations of an existing mental health literacy tool, to support development of an online curriculum for university students in Malawi. Themes identified include poverty-related health challenges, relationship issues, and lack of dialogue about and support for mental health.

Increasing participation of racial and ethnic minorities in clinical trials

janeb13, Pixabay

Participation in clinical trials by people from racial and ethnic minorities is essential to help reduce health disparities. However, distrust in clinical institutions as a result of racism and discrimination has limited participation to date. Health for All is a website designed to help people learn more about clinical trials, and enhance participation of minority communities. Simon and colleagues describe the development of the tool across seven iterative design sessions, as well as usability testing by patrons of libraries attended by underserved communities in Chicago.

Low health literacy widens health inequities

RazorMax, Pixabay

People with lower socioeconomic status are more likely to suffer from multi-morbidities, and have subsequent greater difficulties with self-management of their conditions. In a systematic review by Woodward and colleagues, financial constraints and health literacy, including poor communication from health professionals, were identified as socioeconomic barriers to self-management of multiple long-term conditions. These barriers can further contribute to the widening of health inequities experienced by patients.

Health literacy and self-management of multi-morbidities

Department of Foreign Affairs and Trade, CC BY 2.0

Yadav and colleagues undertook a cross-sectional study to examine levels of health literacy and patient activation among patients with multi-morbid chronic obstructive pulmonary disease (COPD) in Nepal. They found low levels of both health literacy and patient activation among participants. They also found that lower health literacy scores were associated with participants with no education, from Indigenous communities, with a family income less than USD176, and women. The findings are being used to design a COPD self-management program for patients with low health literacy.

Cover image by Freepik


Durand M-A, Yen RW, O’Malley J, Elwyn G, Mancini J (2020) Graph literacy matters: Examining the association between graph literacy, health literacy, and numeracy in a Medicaid eligible population. PLoS ONE 15(11): e0241844.

Jumbe S, Nyali J, Simbeye M, Zakeyu N, Motshewa G, Pulapa SR (2022) ‘We do not talk about it’: Engaging youth in Malawi to inform adaptation of a mental health literacy intervention. PLoS ONE 17(3): e0265530.

Simon MA, O’Brian CA, Tom L, Wafford QE, Mack S, Mendez SR, et al. (2021) Development of a web tool to increase research literacy in underserved populations through public library partnerships. PLoS ONE 16(2): e0246098.

Woodward A, Davies N, Walters K, Nimmons D, Stevenson F, Protheroe J, et al. (2023) Self-management of multiple long-term conditions: A systematic review of the barriers and facilitators amongst people experiencing socioeconomic deprivation. PLoS ONE 18(2): e0282036.

Yadav UN, Lloyd J, Hosseinzadeh H, Baral KP, Bhatta N, Harris MF (2020) Levels and determinants of health literacy and patient activation among multi-morbid COPD people in rural Nepal: Findings from a cross-sectional study. PLoS ONE 15(5): e0233488.

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Closing the Cancer Care Gap – Research Highlights from PLOS ONE

To celebrate World Cancer Day 2022, we are highlighting some of our favorite articles on this year’s theme, “Close the Care Gap”. Our Call for Papers on Cancer and Social Inequity also spotlights this topic, and is open for submission until February 22nd.

Gaps in cancer care may result from reduced availability, affordability, and access to healthcare services, including screening. These issues are felt particularly acutely in low-resource settings in low- and middle-income countries (LMICs), but can also be affected within countries by social factors including socioeconomic status, race, gender, disability, and more. Recent social movements and the COVID-19 pandemic have brought issues surrounding social inequity in healthcare to the forefront.

Research Highlights

The following PLOS ONE articles all describe research addressing this topic, either by identifying and highlighting gaps in cancer care, or assessing solutions to close care gaps and promote more equitable outcomes.

A close-up view of a catheter (a soft thin tube) placed in an African-American woman's arm to deliver chemotherapy.
Rhoda Baer, National Cancer Institute

Powell and colleagues estimate the impact of the Affordable Care Act on colorectal cancer outcomes and racial disparities in North Carolina (NC), a state that did not expand Medicaid. The study uses individual-based simulation models to explore population-level impacts of policy interventions.

A map of Brazil depicting the spatial distribution of adjusted mortality rates for breast cancer

In this ecological study, de Oliveira and colleagues analyze the spatial distribution of late stage diagnosis and mortality of breast cancer, and its correlation with socioeconomic indicators and health service availability

Ultra-low-dose computed tomography image of a pleural nodule

Sayani and colleagues explore the barriers and facilitators to lung cancer screening in low-income individuals living in Toronto. Using qualitative methods, researchers identified and analyzed three themes: pathways of disadvantage, lung cancer risk and early detection, and safe spaces of care.

Hands being washed in a sink
slavoljubovski, Pixabay

The impact of COVID-19 on cancer care has been significant. In this paper, Edge and colleagues explore patient, caregiver, and healthcare worker perspectives on the disruptions and reorganization of cancer services in Australia since the onset of COVID-19.

A mobile phone next to a stethoscope
StockSnap, Pixabay

In this Study Protocol, Baleydier and colleagues test a smartphone app designed to improve access to cervical cancer screening in Cameroon. The app uses computer-aided detection techniques to improve the objectiveness of triage of HPV-positive women. This is proposed as a low-cost screening tool suitable for LMICs.

Submit Your Research

We are very excited to be curating a Collection of papers for PLOS ONE on the topic of Cancer and Social Inequity, and we are still accepting submissions to this call.

We aim to highlight the negative impacts of social inequities on health, identify the effects of social and corporate policies on access to healthcare services, and propose solutions to promote more equitable cancer outcomes and ultimately, social justice. We’re also interested in data exploring how the COVID-19 pandemic has impacted cancer care.

Our Guest Editors 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) share their thoughts on why this topic is important, and their motivations for conducting research in this area in a recent interview.

We welcome submissions to the Call for Papers reporting research in epidemiology, public health, clinical trials, implementation science, and health economics, including manuscripts reporting systematic reviews, qualitative studies, and research protocols.

Submit your papers here by February 22nd 2022.


Baleydier I, Vassilakos P, Viñals R, Wisniak A, Kenfack B, Tsuala Fouogue J, et al. (2021) Study protocol for a two-site clinical trial to validate a smartphone-based artificial intelligence classifier identifying cervical precancer and cancer in HPV-positive women in Cameroon. PLoS ONE 16(12): e0260776.

Edge R, Meyers J, Tiernan G, Li Z, Schiavuzzi A, Chan P, et al. (2021) Cancer care disruption and reorganisation during the COVID-19 pandemic in Australia: A patient, carer and healthcare worker perspective. PLoS ONE 16(9): e0257420.

Oliveira NPDd, Cancela MdC, Martins LFL, de Souza DLB (2021) Spatial distribution of advanced stage diagnosis and mortality of breast cancer: Socioeconomic and health service offer inequalities in Brazil. PLoS ONE 16(2): e0246333.

Powell W, Frerichs L, Townsley R, Mayorga M, Richmond J, Corbie-Smith G, et al. (2020) The potential impact of the Affordable Care Act and Medicaid expansion on reducing colorectal cancer screening disparities in African American males. PLoS ONE 15(1): e0226942. .

Sayani A, Vahabi M, O’Brien MA, Liu G, Hwang S, Selby P, et al. (2021) Advancing health equity in cancer care: The lived experiences of poverty and access to lung cancer screening. PLoS ONE 16(5): e0251264.

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Cancer and Social Inequity: Interview with the Guest Editors

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?
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.

A close-up view of a catheter (a soft thin tube) placed in an African-American woman's arm to deliver chemotherapy.
Image credit: Catheter for Chemotherapy from National Cancer Institute by Rhoda Baer, Public Domain

Please tell us a bit about your current research and how it ties in with these issues?
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?
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).

A linear accelerator (a large piece of medical machinery) is set up to deliver stereotactic radiosurgery.
Image credit: Linear Accelerator from National Cancer Institute by Daniel Sone, Public Domain

How can open science contribute to overcoming these challenges?
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?
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?
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:

A photograph of Prof. Vesna Zadnik

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.

A photograph of Dr. Nixon Niyonzima

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.

A photograph of Prof. Claudia Allemani

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.

The post Cancer and Social Inequity: Interview with the Guest Editors appeared first on EveryONE.