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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.
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.
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.
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. https://mrctcenter.org/health-literacy/tools/overview/). 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.
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!