editorial: special reportwww.kidney-international.org1St. Vincent’s Hospital,Department of Medicine,University of Melbourne,Melbourne, Victoria, Australia;2Division of Nephrology,Hypertension and KidneyTransplantation, Department ofMedicine, University ofCalifornia Irvine, Orange,California, USA; 3School ofNursing and Midwifery, GriffithUniversity, Southport,Queensland, Australia; 4ItalianKidney Foundation, Rome, Italy;5Brigham and Women’sHospital, Renal Division,Department of Medicine,Boston, Massachusetts, USA;6Tamilnad Kidney Research(TANKER) Foundation, TheInternational Federation ofKidney Foundations-WorldKidney Alliance (IFKF-WKA),Chennai, India; 7InternationalSociety of Nephrology, Brussels,Belgium; 8Division ofNephrology and Hypertension,1st Department of InternalMedicine, AHEPA Hospital,Aristotle University ofThessaloniki, Thessaloniki,Greece; 9Nephrology Unit,Department of InternalMedicine, Faculty of Medicine,Cairo University, Giza, Egypt;10Renal Unit, Department ofMedicine, College of Medicine,University of Nigeria, ItukuOzalla, Enugu, Nigeria; and11International Federation ofKidney Foundations – WorldKidney Alliance, The JockeyClub School of Public Healthand Primary Care, The ChineseUniversity of Hong Kong, HongKong, ChinaThis article is being publishedin Kidney International andreprinted concurrently inseveral journals. The articlescover identical concepts andwording, but vary in minorstylistic and spelling changes,detail, and length of manuscript in keeping with eachjournal’s style. Any of theseversions may be used in citingthis article.Note that all authors contributed equally to the conception, preparation, and editingof the manuscript.Kidney International (2022) -, -–-Kidney health for all: bridging the gapin kidney health education and literacyRobyn G. Langham1, Kamyar Kalantar-Zadeh2, Ann Bonner3,Alessandro Balducci4, Li-Li Hsiao5, Latha A. Kumaraswami6, Paul Laffin7,Vassilios Liakopoulos8, Gamal Saadi9, Ekamol Tantisattamo2, Ifeoma Ulasi10 andSiu-Fai Lui11 for the World Kidney Day Joint Steering Committee12The high burden of kidney disease, global disparities in kidney care, and poor outcomes ofkidney failure bring a concomitant growing burden to persons affected, their families, andcarers, and the community at large. Health literacy is the degree to which persons andorganizations have or equitably enable individuals to have the ability to find, understand,and use information and services to make informed health-related decisions and actionsfor themselves and others. Rather than viewing health literacy as a patient deficit,improving health literacy largely rests with health care providers communicating andeducating effectively in codesigned partnership with those with kidney disease. For kidneypolicy makers, health literacy provides the imperative to shift organizations to a culturethat places the person at the center of health care. The growing capability of and access totechnology provides new opportunities to enhance education and awareness of kidneydisease for all stakeholders. Advances in telecommunication, including social mediaplatforms, can be leveraged to enhance persons’ and providers’ education; The WorldKidney Day declares 2022 as the year of “Kidney Health for All” to promote globalteamwork in advancing strategies in bridging the gap in kidney health education andliteracy. Kidney organizations should work toward shifting the patient-deficit healthliteracy narrative to that of being the responsibility of health care providers and healthpolicy makers. By engaging in and supporting kidney health–centered policy making,community health planning, and health literacy approaches for all, the kidneycommunities strive to prevent kidney diseases and enable living well with kidney disease.Kidney International (2022)-, YWORDS: educational gap; empowerment; health literacy; health policy; information technology; kidney health;partnership; prevention; social mediaCopyright ª 2022, International Society of Nephrology. Published by Elsevier Inc. All rights reserved.iven the high burden of kidney diseaseand global disparities related to kidneycare, in carrying forward our mission ofadvocating Kidney Health for All, the challenging issue of bridging the well-identified gapin the global understanding of kidney diseaseand its health literacy is the theme for WorldKidney Day (WKD) 2022. Health literacy isdefined as 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 informhealth-related decisions and actions for themselves and others.1 Not only is there is growingrecognition of the role that health literacy hasin determining outcomes for persons affectedby kidney disease and the community inGgeneral, but there is an emergent imperativefor policy makers worldwide to be informedand cognizant of opportunities and realmeasurable outcomes that can be achievedthrough kidney-specific preventative strategies.The global community of people with kidneydiseaseMost people are not aware of what kidneys arefor or even where their kidneys are. For thoseafflicted by disease and the subsequent effectson overall health, an effective health careprovider communication is required to support individuals to be able to understand whatto do, to make decisions, and to take action.Health literacy involves more than functionalabilities of an individual; it is also the cognitive1

editorial: special reportCorrespondence: Robyn G.Langham, University ofMelbourne, Melbourne, Victoria,Australia. E-mail: [email protected]: EkamolTantisattamo, Division ofNephrology, Hypertension andKidney Transplantation,Department of Medicine,University of California IrvineSchool of Medicine, 101 TheCity Drive South, Orange,California 92868, USA. E-mail:[email protected] World Kidney Day JointSteering Committee is listed inthe Appendix.Received 8 October 2021;revised 14 December 2021;accepted 28 December 20212and social skills needed to gain access to, understand, and use information to managehealth condition.2 It is also contextual3 in thatas health needs change, so too does the level ofunderstanding and ability to problem solvealter. Health literacy is, therefore, an interaction between individuals, health care providers, and health policy makers.4 This whythe imperatives around health literacy are nowrecognized as indicators for the quality of localand national health care systems and healthcare professionals within it.5 For chronic kidney disease (CKD), as the disease progressesalongside other health changes and increasingtreatment complexities, it becomes moredifficult for individuals to manage.6 Promotedin health policy for around a decade involvingcare partnerships between health-centeredpolicy, community health planning, andhealth literacy,7 current approaches need to beshifted forward (Table 1).Assessing health literacy necessitates the useof appropriate multidimensional patientreported measures, such as the World HealthOrganization–recommended Health LiteracyQuestionnaire (available in over 30 languages)rather than tools measuring only functionalhealth literacy (e.g., Rapid Estimate of AdultLiteracy in Medicine or Short Test of Functional Health Literacy in Adults).8 It is thereforenot surprising that studies of low health literacy(LHL) abilities in people with CKD have beendemonstrated to be associated with poor CKDknowledge, self-management behaviors, andhealth-related quality of life and in those withgreater comorbidity severity.7 Unfortunately,most CKD studies have measured only functional health literacy, so the evidence that LHLresults in poorer outcomes, particularly that itincreases health care utilization and mortality,9and reduces access to transplantation,10 isweak.Recently, health literacy is now consideredto be an important bridge between lower socioeconomic status and other social determinants of health.4 Indeed, this is not afeature that can be measured by the grossdomestic product of a country, as the effectsof LHL on the extent of CKD in the community are experienced globally regardless ofcountry income status. The lack of awarenessof risk factors of kidney disease, even in thosewith high health literacy abilities, is testamentto the difficulties in understanding this disease, and why the United States, for instance,recommends that a universal n.11So, what does the perfect health literacyprogram look like for people with CKD? Inseveral high-income countries, there are national health literacy action plans with theemphasis shifted to policy directives, organizational culture, and health care providers. InAustralia, for instance, a compulsory healthliteracy accreditation standard makes the healthcare organization responsible for ensuringproviders are cognizant of individual healthliteracy abilities.12 Although many high-incomecountries, health care organizations, nongovernmental organizations, and jurisdictions areproviding an array of consumer-facing webbased programs that provide detailed information and self-care training opportunities,most are largely designed for individual/familyuse that are unlikely to mitigate LHL. There is,however, substantial evidence that interventions improving health care providercommunication are more likely to improveunderstanding of health problems and abilitiesto adhere to complex treatment regimens.13Access to information that is authentic andtailored specifically to the needs of the individual and the community is the aim. Thechallenge is recognized acutely in more remoteand low- to middle-income countries of theworld, specifically the importance of culturallyappropriate knowledge provision. The principals of improving health literacy are the same,but understanding how to proceed, and puttingconsumers in charge, with a codesignapproach, is critical and may result in adifferent outcome in more remote parts of theworld. This principal especially applies tocommunities that are smaller, with less accessto electronic communication and health careservices, where the level of health literacy isshared across the community and where whataffects the individual also affects all the community. Decision support systems are different,led by elders, and in turn educational resourcesare best aimed at improving knowledge of thewhole community.A systematic review of the evaluation ofinterventions and strategies shows this area ofresearch is still at an early stage,14 with nostudies unravelling the link between LHL andpoor CKD outcomes. The best evidence is insupporting targeted programs on improvingcommunication capabilities of health careprofessionals as central. One prime example isTeach-back, a cyclical, simple, low-costKidney International (2022) -, -–-

Kidney International (2022) -, -–-Table 1 Summary characteristic of kidney health promotion, involving kidney health–centered policy, community kidney health planning, and kidney health literacy,and proposed future directionKidney healthpromotionKidney health–centered policyDefinition Incorporate kidney healthinto policy decision makingPrioritize policies withprimary preventionfor CKDStakeholders GovernancePolicy makersInsurance agenciesCurrent status Policy emphasizing treatmentfor CKD and kidney failurerather than kidney healthpreventionLimitations/challenges Economic-driven situationchallenging CKD risk factorminimization (e.g., foodpolicy)Suggested solutions/future research Community kidneyhealth planning Kidney healthliteracy Building up preventivestrategies to promotehealthy communitiesand primary health carefacilitiesReceive knowledge, skills,and information to behealthy Community leadershipKidney patientadvocacy People with CKDCare partnersHealth care providers Lack of awareness of CKDand risk factorsCare partner burden andburnoutInadequate health careworkersHigh patients-to-health careworkers ratio, especially inrural areas Education and understandingkidney health promotion ofcommunity leadership andpeople Inadequate policy direction Ineffective health careproviders’ communicationskills CKD, chronic kidney disease; LMIC, low- to middle-income country.Organizational paradigm shift toward healthliteracyImproving communication between health careproviders with patients and care partnersUsing teach-back methods for consumereducationAdapting technologies for appropriate healthliteracy and sociocultural environmentsFamily engagement in the patient careIncentive for community health care providersin rural areas3editorial: special report Belief in community leadersin LMICPromote implementation of public health program for primary CKD preventionPromote sustainable treatment for CKD anddialysis- Increase kidney transplant awareness- Enhance visibility and encourage brothersister nephrology and transplant program inLMICSupport research funding from government- Health care cost-effectiveness for caring forCKD- Kidney failure, including maintenance dialysisand transplant- Promote surveillance programs for kidneydiseases and their risk factorsImprove role model of communityEnhance kidney support networks

editorial: special reporteducation intervention, shows promise forimproving communication, knowledge, andself-management in the CKD populations inlow- or high-income countries.15 Furthermore,the consumer-led voice has articulated researchpriorities that align closely with principals feltto be important to success of education:building new education resources, devised inpartnership with consumers, and focused onthe needs of vulnerable groups. Indeed, programs that address the lack of culturally safe,person-centred and holistic care, along withimproving the communication skills of healthprofessionals, are crucial for those with CKD.16The networked community of kidney healthcare workersNonphysician health care workers, includingnurses and advanced practice providers (physician assistants and nurse practitioners) as well asdietitians, pharmacists, social workers, technicians, physical therapists, and other allied healthprofessionals, often spend more time with persons with kidney disease, compared with nephrologists and other physician specialists. In anambulatory care setting at an appointment, inthe emergency department, or in the inpatientsetting, these health care professionals often seeand relate to the patient first, last, and in between, given that physician encounters are oftenshort and focused. Hence, the nonphysicianhealth care workers have many opportunities todiscuss kidney disease–related topics with theindividuals and their care partners and toempower them.17,18 For instance, medical assistants can help identify those with or at risk ofdeveloping CKD and can initiate educatingthem and their family members about the roleof diet and lifestyle modification for primary,secondary, and tertiary prevention of CKD whilewaiting to see the physician.19 Some health careworkers provide networking and support forkidney patient advocacy groups and kidneysupport networks, which have been initiated orexpanded via social media platforms(Figure 1).20,21 Studies examining the efficacy ofsocial media in kidney care and advocacy are onthe way.22,23Like physicians, many activities of nonphysician health care workers have been increasinglyaffected by the rise of electronic health recordingand growing access to internet-based resources,including social media, that offer educationalmaterials related to kidney health, includingkidney-preserving therapies with traditional andemerging interventions.24 These resources can beused for both self-education and for networkingand advocacy on kidney disease awareness andlearning. Increasingly, more health care professionals are engaged in some types of socialmedia–based activities, as shown in Table 2. Atthe time of this writing, the leading social mediaused by many—but not all—kidney health careworkers include Facebook, Instagram, Twitter,Figure 1 Schematic representation of consumer and health care professionals’ collaborative advocacyusing social media platforms with the goal of Kidney Health for All.4Kidney International (2022) -, -–-

editorial: special reportTable 2 Social media that are more frequently used for kidney education and advocacySocial PinterestStrengthLimitationsAdditional comments Frequently used social media Widely used for entertaining User-friendly platform forplatform by many kidneypurposes, which can dilutekidney advocacy, enablingpatients and patient groupsits professional utilitywide ranges of outreachgoals Photo-predominating Not frequently used by Picture friendly, potentiallyplatformhealth care professionalseffective for illustrativeeducational purposes Often used by physician Less frequently used by Increasing popularity amongspecialists and scientists,patients and care partnersphysician and specialty circlesincluding nephrologists More often used by Originally designed for Mostly effective to reach outprofessionals, including inemployment andto industry and managerialindustryjob-seeking networkingprofessionals Video-predominating Less effective with Wide ranges of outreach andplatformnon–video-based formatseducational targets Widely used in mainland Access is often limited to Effective platform to reach outChinathose living in China orto patients and health careits diasporaprofessionals in China Picture-based, often used Currently limited use by Useful for dietary and lifestyleby dietitianssome health care workerseducationOther popular social media at the time of this publication include, but not limited to, Tik Tok, Snapchat, Reddit, Tumblr, Telegram,Quora, and many others that are currently only occasionally used in kidney advocacy activities. Mobile and social media messagingapps include, but not limited to, WhatsApp, Zoom, Facebook Messengers, Skype Teams, and Slack.Note that platforms that are more often used as internet-based messaging are not included.LinkedIn, and YouTube. In some regions of theworld, certain social media are more frequentlyused than others given unique cultural or accessconstellations (e.g., WeChat is a platform oftenused by health care workers and patient groups inChina). Some health care professionals, such asmanagers and those in leadership and advocacyorganization positions, may choose to embarkon social media to engage those with CKD andtheir care partners or other health care professionals in alliance building and marketing. Tothat end, effective communication strategies andoutreach skills specific to responsible use of socialmedia can provide clear advantages given thatthese skills and strategies are different and mayneed modification in those with LHL. It isimperative to ensure the needed knowledge andtraining for accountable approach to social mediais provided to health care providers, so that theseoutreach strategies are utilized with the neededawareness of their unique strengths and pitfalls,as follows25:(i) Consumers’ and care partners’ confidentiality may not be breached upon postinganything on social media, including indirect referencing to a specific individual or aparticular description of a conditionunique to a specific person (e.g., uponsoliciting for transplant kidney donors onsocial media).26,27(ii) Confidential information about clinics,hospitals, dialysis centers, or similar healthKidney International (2022) -, -–-care and advocacy entities may not bedisclosed on social media without ensuringthat the needed processes, including collecting authorizations to disclose, areundertaken.(iii) Health care workers’ job security and careers should remain protected with thorough review of the content of the messagesand illustrations/videos before onlineposting.(iv) Careless and disrespectful language andemotional tones are often counterproductive and may not be justified under thecontext of freedom of speech.The global kidney community of policy andadvocacyPolicy and advocacy are well-recognized toolsthat, if properly deployed, can bring aboutchange and paradigm shift at jurisdictionallevel. The essence of advocating for policychange to better address kidney disease is, initself, an exercise in improving health literacy ofthe policy makers. Policy development, at itscore, is a key stakeholder or stakeholder group(e.g., the kidney community, who believes thata problem exists that should be tackled throughgovernmental action). There is an increasingrecognition of the importance of formulatingsuccinct, meaningful, and authentic information, akin to improving health literacy, to present to government for action.5

editorial: special reportRobust and efficacious policy is alwaysunderpinned by succinct and applicable information; however, the development andcommunication of this message, designed tobridge the gap in knowledge of relevant jurisdictions, is only part of the process of policydevelopment. An awareness of the process isimportant to clinicians who are aiming toadvocate for effective change in prevention orimprovement of outcomes in the CKDcommunity.Public policies, the plans for future actionaccepted by governments, are articulatedthrough a political process in response stakeholder observation, usually written as a directive, law, regulation, procedure, or circular.Policies are purpose fit and targeted to definedgoals and specific societal problems and areusually a chain of actions effected to solve thosesocietal problems.28 Policies are an importantoutput of political systems. Policy developmentcan be formal, passing through rigorouslengthy processes before adoption (such asregulations), or it can be less formal andquickly adopted (such as circulars). As alreadymentioned, the governmental action envisagedby the key stakeholders as solution to a problem is at its core. The process enables stakeholders to air their views and bring theirconcerns to the fore. Authentic informationthat is meaningful to the government is critical.The policy development process can bestratified into 5 stages (i.e., the policy cycle), asdepicted by Andersen (1994)29 and adaptedand modified by other authors30 (Figure 2).The policy cycle constitutes an expedientframework for evaluating the key componentsof the process.Subsequently, the policy moves on toimplementation phase. This phase may requiresubsidiary policy development and adoption ofnew regulations or budgets (implementation).Policy evaluation is integral to the policy processes and applies evaluation principles andmethods to assess the content, implementation,or impact of a policy. Evaluation facilitatesunderstanding and appreciation of the worthand merit of a policy as well as the need for itsimprovement. More important, of the 5 principles of advocacy that underline policy making,31 the most important for cliniciansengaged in this space is that of commitment,persistence, and patience. Advocacy takes timeto yield the desired results.The Advocacy Planning Framework, developed by Young and Quinn in 2002,30 consistsof overlapping circles representing 3 sets ofconcepts (way into the process, the messenger,and message and activities) that are key toplanning any advocacy campaign:(i) “Way into the process”: discusses the bestapproaches to translate ideas into thetarget policy debate and identify theappropriate audience to target.Agenda setting:Identify and define theproblem (in this case, CKDepidemic) and define thearena (legislature, ministry,LGAs)Evaluation:Stakeholders assess howwefficient, effective, andsuccessful the policies are.Also consider if the policyneeds to continue, bemodified, or discontinued.Implementation:Health care workers andother stakeholdersprovide necessaryguidance to persons andbodies implementing thepolicy.Formulation:Objective setting, such asearly detection andprevention, rationing ofaccess to KRT, or increasingaccess to the kidney, bearing inmind cost, political, andethical expediencyAdoption:Experts/scientists offerexpert advice as to whichsolution is best (such asearly detection and earlytreatment).Figure 2 Policy cycle involving 5 stages of policy development. CKD, chronic kidney disease; KRT, kidneyreplacement therapy; LGA, local government area.6Kidney International (2022) -, -–-

editorial: special report(ii) Messenger: talks about the image maker orface of the campaign and other supportparaphernalia that are needed.(iii) Message and activities: describe what canbe said to the key target audiences that isengaging and convincing. And how best itcan be communicated through appropriatecommunication tools.Advocacy is defined as "an effort orcampaign with a structured and sequenced planof action which starts, directs, or prevents aspecific policy change.”31 The goal being toinfluence decision makers through communicating directly with them or getting theircommitment through secondary audiences(advisers, the media, or the public) to the endthat the decision maker understands, isconvinced, takes ownership of the ideas, andfinally has the compulsion to act.31 As withimproving health literacy, it is the communication of ideas to policy makers for adoptionand implementation as policy that is key. Thereis much to be done with bridging this gap inunderstanding of the magnitude of communityburden that results from CKD. Without goodcommunication, many good ideas and solutions do not reach communities and countrieswhere they are needed. Again, aligned with theprinciples of developing resources for healthliteracy, the approach also needs to be nuancedaccording to the local need, aiming to have themany good ideas and solutions be communicated to communities and countries where theyare needed.Advocacy requires galvanizing momentumand support for the proposed policy orrecommendation. The process is understandably slow as it involves discussions and negotiations for paradigms, attitudes, and positionsto shift. In contemplating advocacy activities,multiple factors must be considered, interestingly not too dissimilar to that of buildinghealth literacy resources: What obstructions aredisrupting the policy-making process frommaking progress? What resources are availableto enable the process to succeed? Is the policyobjective achievable considering all variables? Isthe identified problem already being consideredby the policy makers (government or multinational organizations)? Any interest or momentum generated around it? Understandably,if there is some level of interest and if government already has its spotlight on the issue, it islikely to succeed.Approaches to choose from include thefollowing31,32:Kidney International (2022) -, -–-Advising (researchers are commissioned toproduce new evidence-based proposals toassist the organization in decision making). Activism: involves petitions, public demonstrations, posters, fliers, and leaflet dissemination, often used by organizations topromote a certain value set. Media campaign: having public pressureon decision makers helps in achievingresults. Lobbying: entails face-to-face meetings withdecision makers; often used by business organizations to achieve their purpose.Here lies the importance of effective andsuccessful advocacy to stakeholders, includingpolicy makers, health care professionals,communities, and key change makers in society. The WKD, since inception, has aimedat playing this role. WKD has gained people’strust by delivering relevant and accuratemessaging and supporting leaders in localengagement, and it is celebrated by kidneycare professionals, celebrities, those with thedisease, and their care givers all over theworld. To achieve the goal, an implementation framework of success in a sustainableway includes creativity, collaboration, andcommunication.The ongoing challenge for the International Society of Nephrology and International Federation of Kidney Foundations–World Kidney Alliance, through the JointSteering Committee of WKD, is to operationalize how to collate key insights fromresearch and analysis to effectively feed thepolicy-making process at the local, national,and international levels, to inform or guidedecision making (i.e., increasing engagementof governments and organizations, like WorldHealth Organization, United Nations, andregional organizations, especially in lowresource settings). There is a clear need forongoing renewal of strategies to increase efforts at closing gap in kidney health literacy,empowering those affected with kidney disease and their families, giving them a voice tobe heard, and engaging with the civil society.This year, the Joint Steering Committee ofWKD declares “Kidney Health for All” as thetheme of the 2022 WKD to emphasize andextend collaborative efforts among peoplewith kidney disease, their care partners, healthcare providers, and all involving stakeholdersfor elevating education and awareness onkidney health and saving lives with thisdisease. 7

editorial: special reportConclusionsIn bridging the gap of knowledge to improveoutcomes for those with kidney disease on aglobal basis, an in-depth understanding of theneeds of the community is required. The samecan be said for policy development, understanding the processes in place for engagementof governments worldwide, all underpinned bythe important principal of codesign of resources and policy that meets the needs of thecommunity for which it is intended.For World Kidney Day 2022, kidney organizations, including the International Society of Nephrology and InternationalFederation of Kidney Foundations–WorldKidney Alliance, have a responsibility toimmediately work toward shifting the patientdeficit health literacy narrative to that of being the responsibility of clinicians and healthpolicy makers. LHL occurs in all countriesregardless of income status; hence, simple,low-cost strategies are likely to be effective.Communication, universal precautions, andteach back can b

University of California Irvine School of Medicine, 101 The City Drive South, Orange, California 92868, USA. E-mail: [email protected] 12The World Kidney Day Joint Steering Committee is listed in the Appendix. Received 8 October 2021; revised 14 December 2021; accepted 28 December 2021 editorial: special report 2 Kidney International (2022