Robyn G. Langham, MBBS, PhD; Kamyar Kalantar-Zadeh, MD, MPH, PhD; Ann Bonner, RN, PhD; Alessandro Balducci, MD; Li-Li Hsiao, MD, PhD; Latha A. Kumaraswami, BA; Paul Laffin, MS; Vassilios Liakopoulos, MD, PhD; Gamal Saadi, MD; Ekamol Tantisattamo, MD, MPH; Ifeoma Ulasi, MD; Siu-Fai Lui, MD; for the World Kidney Day Joint Steering Committee

The challenging issue of bridging the well-identified gap in the health literacy (HL) of kidney disease, from both an individual and a global perspective, is the theme for World Kidney Day (WKD) 2022. HL, simply put, is the degree to which persons and organizations have – or equitably enable individuals to have – the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.1

Not only is there is growing recognition of the role that HL has in determining outcomes for persons affected by kidney disease and the community in general, but there is an emergent imperative for policy makers worldwide to be informed and cognizant of opportunities and measurable outcomes that can be achieved through kidney specific preventative strategies.  Promoted in health policy for around a decade, current approaches that increase partnerships between health-centered policy, community health planning, and health literacy,2 need to be shifted forwarded.

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A. The global community of people with kidney disease

Most in the community do not even know what their kidneys do or where their kidneys are, amplifying the challenge for those afflicted by chronic kidney disease (CKD).  Effective healthcare provider communication is critical in supporting individuals in not only understanding their condition, but in what to do, in making decisions and taking action. Optimal HL includes not only the functional, but also the cognitive and social skills needed to gain access to, understand, and use information to manage health conditions.  HL is also contextual in that as health needs change, so too does the level of understanding required and the ability to problem solve change.  This is particularly with CKD when disease progression, as health changes and treatments become increasingly complex, in turn, making it more challenging for individuals to manage.3  

While it has been recognized in some studies that low HL abilities in people with CKD have demonstrated an association with poor CKD knowledge, self-management behaviours, and health-related quality of life, most CKD studies have measured only functional HL.2  Because of this, the evidence that low HL increases healthcare utilization and mortality,4 and reduces access to transplantation5 is weak.  There is a need for studies that assess HL using appropriate multidimensional patient-reported measures such as the World Health Organization (WHO) recommended Health Literacy Questionnaire, rather than tools measuring only functional health literacy.6

HL is considered an important bridge between lower socio-economic status, and other social determinants of health.4 This is, however, not a feature that can be measured by the gross domestic product (GDP) of a county, notably that the effects of low HL on the extent of CKD in the community is recognized as a global phenomenon regardless of GDP. The lack of awareness of risk factors of kidney disease, even in those with high HL, is testament to the difficulties in understanding this disease.  The United States, for instance, recommends that a  ‘universal precautions’ approach be undertaken toward improving HL.7 Imperatives around HL are now recognized as indicators for the quality of local and national healthcare systems and healthcare professionals within it.8  

So, what does the perfect HL program look like for people with CKD?  In several high-income countries there are national HL action plans with the emphasis shifted to policy directives, organizational culture, and healthcare providers,9 some with compulsory HL accreditation standards ensuring healthcare providers are cognizant of individual HL requirements. Despite the increasing array of web-based programs that provide detailed information and self-care training opportunities, there is substantial evidence that improving healthcare provider communication skills are more likely to improve understanding of health problems and abilities to adhere to complex treatment regimens.10 

Access to information that is authentic and tailored specifically to the needs of the individual and the community is the aim, specifically the provision of culturally appropriate knowledge.  In developing an approach to improving HL, incorporating local consumers in a co-design approach will ensure outcomes that are more appropriate to need in different regions of the world.  This applies especially to communities that are smaller, with less access to electronic communication and health care services, where the level of HL is shared across the community and where, what affects the individual also affects all the community.

 HL research is still at an early stage.11  The best evidence supports the provision of targeted programs aimed at improving communication capabilities of healthcare professionals.  Indeed, programs that address the lack of culturally safe, person-centred and holistic care, along with improving the communication skills of health professionals is crucial for those with CKD.12

B. The global kidney community of policy and advocacy

 HL is not only an identified gap between individuals and their healthcare providers, but also central in advocacy with health policy makers.13  Policy and advocacy are well recognized tools that can bring about change and paradigm shift at jurisdictional level, in turn improving community health.  At the centre of advocating for policy change to better address health outcomes is an exercise in improving HL of the policy makers.  Good policy development requires good understanding of the problem at hand.  For the key stakeholder, for example the kidney community, who believes that a problem exists which should be tackled through governmental action, there is an increasing recognition of the importance of formulating succinct, meaningful and authentic information, to present to government for action, akin to approaches for improving HL for those with CKD.

Having said that, the development and communication of this message, designed to bridge the gap in knowledge of relevant jurisdictions, is only part of the process of policy development.  An awareness of the policy process is important to clinicians who are aiming to advocate for effective change in prevention or improvement of outcomes in the CKD community.  Authentic information that is meaningful to the government is critical.  The policy development process can be stratified into 5 stages:14 centered policy, community kidney health planning, and kidney health literacy, and proposed future direction. The policy cycle constitutes an expedient framework for evaluating the key components of the process.  Importantly, of the five principles of advocacy that underline policy making,15 the most important for clinicians engaged in this space is that of commitment, persistence and patience. The Advocacy Planning Framework developed by Young and Quinn in 201214 consists of three overlapping concepts that are key to planning any campaign:

  1. “Way into the process” – discusses the best approaches to translate ideas into the target policy debate and identify the appropriate audience to target.
  2. Messenger— talks about the image maker or face of the campaign and other support paraphernalia that are needed.
  3. Message and activities— what can be said to the target audiences that is engaging and convincing, and how best it can be communicated through appropriate tools. 

As with improving HL, it is the communication of ideas to policy makers for adoption and implementation as policy that is key. There is much to be done with bridging this gap in understanding of the magnitude of community burden that results from CKD. Without good communication, many good ideas and solutions do not reach communities and countries. Again, aligned with the principles of developing resources for HL for those who suffer CKD, the approach to jurisdictions also needs to be nuanced according to the local need, aimed at the needs of the local community.

Advocacy requires galvanizing momentum and support for the proposed policy or recommendation.  The process is understandably slow as it involves discussions and negotiations for paradigms, attitudes, and positions to shift, and multiple factors must be considered.

Approaches to choose from include:15,16

  • Advising – providing new evidence-based proposals to assist in decision-making.
  • Activism – involves petitions, public demonstrations, posters, fliers, and leaflet dissemination often used by organizations to promote a certain value set.
  • Media campaign – having public pressure on decision makers helps in achieving results.
  • Lobbying – entails face-to-face meetings with decision makers; often used by business organizations to achieve their purpose. 

Here lies the importance of effective and successful advocacy policy makers, healthcare professionals, communities, and key change makers in society.  WKD has gained trust by delivering relevant and authentic messaging, supporting leaders in local engagement, and celebrated by kidney care professionals, and those with CKD and their care givers all over the world. To achieve this goal, an implementation framework of sustainable success requires creativity, collaboration, and communication. Utilizing different social media platforms is an option to connect patients, family, and healthcare professionals and provide kidney education.  

The ongoing challenge for the International Society of Nephrology and International Federation of Kidney Foundations – World Kidney Alliance, through the Joint Steering Committee of WKD, is to operationalize the policy making process at the local, national, and international levels, to inform or guide decision making.  This may be via increasing engagement of global organizations like WHO, the United Nations, or through regional governments in low-resource settings.  There is a clear need for ongoing renewal of strategies, to increase efforts at closing the gap in kidney HL, ultimately empowering those affected with kidney disease and their families, giving them a voice to be heard.

Posted with permission of the World Kidney Day Steering Committee. Copyright © 2022, World Kidney Day Steering Committee.


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