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Robyn G. Langham, MBBS, Ph.D.*, Kamyar Kalantar-Zadeh, M.D., MPH, Ph.D.**, Ann Bonner, RN, Ph.D.***,

Alessandro Balducci, M.D.****, Li-Li Hsiao, M.D., Ph.D.*****, Latha A. Kumaraswami, BA.******, Paul Lan,

MS.*******,

Vassilios Liakopoulos, M.D., Ph.D.********, Gamal Saadi, M.D.*********, Ekamol Tantisattamo,

M.D., MPH**,

Ifeoma Ulasi, M.D.**********, Siu-Fai Lui, M.D.*********** for the World Kidney Day Joint

Steering Committee************

*St. Vincent’s Hospital, Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia; **Division of Nephrology, Hypertension

and Kidney Transplantation, Department of Medicine, University of California Irvine School of Medicine, Orange, California, USA;***School

of Nursing and Midwifery, Grith University, Southport, Queensland, Australia; ****Italian Kidney Foundation, Rome, Italy; *****Brigham

and Women’s Hospital, Renal Division, Department of Medicine, Boston, Massachusetts, USA; ******Tamilnad Kidney Research (TANKER)

Foundation, e International Federation of Kidney Foundations - World Kidney Alliance (IFKF - WKA), Chennai, India; ******International

Society of Nephrology, Brussels, Belgium; ********Division of Nephrology and Hypertension, 1st Department of Internal Medicine, AHEPA Hospital,

Aristotle University of essaloniki, essaloniki, Greece; *********Nephrology Unit, Department of Internal Medicine, Faculty of Medicine, Cairo

University, Giza, Egypt; **********Renal Unit, Department of Medicine, College of Medicine, University of Nigeria, Ituku-Ozalla, Enugu, Nigeria;

***********International Federation of Kidney Foundations – World Kidney Alliance, e Jockey Club School of Public Health and Primary Care,

e Chinese University of Hong Kong, Hong Kong, China; ************e World Kidney Day Joint Steering Committee is listed in the Appendix.

Kidney Health for all: Bridging the Gap in Kidney

Health Education and Literacy

ABSTRACT

e high burden of kidney disease, global disparities in kidney care, and poor outcomes of kidney failure bring

a concomitant growing burden to persons aected, their families, and carers, and the community at large. Health

literacy is the degree to which persons and organizations have or equitably enable individuals to have the ability

to nd, understand, and use information and services to make informed health-related decisions and actions for

themselves and others. Rather than viewing health literacy as a patient decit, improving health literacy largely

rests with health care providers communicating and educating eectively in codesigned partnership with those

with kidney disease. For kidney policy makers, health literacy provides the imperative to shi organizations to

a culture that places the person at the center of health care. e growing capability of and access to technology

provides new opportunities to enhance education and awareness of kidney disease for all stakeholders. Advances

in telecommunication, including social media platforms, can be leveraged to enhance persons’ and providers’

education; e World Kidney Day declares 2022 as the year of “Kidney Health for All” to promote global teamwork

in advancing strategies in bridging the gap in kidney health education and literacy. Kidney organizations should

work toward shiing the patient-decit health literacy narrative to that of being the responsibility of health care

providers and health policy makers. By engaging in and supporting kidney health–centered policy making, community

health planning, and health literacy approaches for all, the kidney communities strive to prevent kidney diseases

and enable living well with kidney disease.

Keywords: Educational gap; empowerment; health literacy; health policy; information technology; kidney health;

partnership; prevention; social media (Siriraj Med J 2022; 74: 202-210)

Corresponding author: Robyn G. Langham

E-mail: rlangham@unimelb.edu.au

Received 11 February 2022 Revised 11 February 2022 Accepted 14 February 2022

ORCID: https://orcid.org/0000-0002-2735-0161

http://dx.doi.org/10.33192/Smj.2022.25

Reprints: Ekamol Tantisattamo

E-mail: etantisa@hs.uci.edu

ORCID: https://orcid.org/0000-0003-0883-6892

All material is licensed under terms of

the Creative Commons Attribution 4.0

International (CC-BY-NC-ND 4.0)

license unless otherwise stated.

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Given the high burden of kidney disease and global

disparities related to kidney care, in carrying forward

our mission of advocating Kidney Health for All, the

challenging issue of bridging the well-identied gap in

the global understanding of kidney disease and its health

literacy is the theme for World Kidney Day (WKD) 2022.

Health literacy is dened as the degree to which persons

and organizations have-or equitably enable individuals to

have-the ability to nd, understand, and use information

and services to inform health-related decisions and

actions for themselves and others.

Not only is there is

growing recognition of the role that health literacy has

in determining outcomes for persons aected 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 real

measurable outcomes that can be achieved through

kidney-specic preventative strategies.

e global community of people with kidney disease

Most people are not aware of what kidneys are for

or even where their kidneys are. For those aicted by

disease and the subsequent eects on overall health, an

eective health care provider communication is required

to support individuals to be able to understand what to

do, to make decisions, and to take action. Health literacy

involves more than functional abilities of an individual;

it is also the cognitive and social skills needed to gain

access to, understand, and use information to manage

health condition.

It is also contextual

in that as health

needs change, so too does the level of understanding

and ability to problem solve alter. Health literacy is,

therefore, an interaction between individuals, health

care providers, and health policy makers.

is why the

imperatives around health literacy are now recognized

as indicators for the quality of local and national health

care systems and health care professionals within it.

For

Chronic Kidney Disease (CKD), as the disease progresses

alongside other health changes and increasing treatment

complexities, it becomes more dicult for individuals to

manage.

Promoted in health policy for around a decade

involving care partnerships between health-centered

policy, community health planning, and health literacy,

current approaches need to be shied forward (Table1).

Assessing health literacy necessitates the use of

appropriate multidimensional patient-reported measures,

such as the World Health Organization–recommended

Health Literacy Questionnaire (available in over 30

languages) rather than tools measuring only functional

health literacy (e.g., Rapid Estimate of Adult Literacy in

Medicine or Short Test of Functional Health Literacy

in Adults).

It is therefore not surprising that studies

of low health literacy (LHL) abilities in people with

CKD have been demonstrated to be associated with

poor CKD knowledge, self-management behaviors, and

health-related quality of life and in those with greater

comorbidity severity.

Unfortunately, most CKD studies

have measured only functional health literacy, so the

evidence that LHL results in poorer outcomes, particularly

that it increases health care utilization and mortality,

and reduces access to transplantation,

is weak.

Recently, health literacy is now considered to be an

important bridge between lower socioeconomic status

and other social determinants of health.

Indeed, this is

not a feature that can be measured by the gross domestic

product of a country, as the eects ofLHL on the extent

of CKD in the community are experienced globally

regardless of country income status. e lack of awareness

of risk factors ofkidney disease, even in those with high

health literacy abilities, is testament to the diculties in

understanding this disease, and why the United States,

for instance, recommends that a universal precautions

approach toward health literacy is undertaken.

So, what does the perfect health literacy program

look like for people with CKD? In several high-income

countries, there are national health literacy action plans

with the emphasis shied to policy directives, organizational

culture, and health care providers. In Australia, for instance,

a compulsory health literacy accreditation standard makes

the health care organization responsible for ensuring

providers are cognizant of individual health literacy

abilities.

Although many high-income countries, health

care organizations, nongovernmental organizations, and

jurisdictions are providing an array of consumer-facing

web-based programs that provide detailed information and

self-care training opportunities, most are largely designed

for individual/family use that are unlikely to mitigate LHL.

ere is, however, substantial evidence that interventions

improving health care provider communication are more

likely to improve understanding of health problems and

abilities to adhere to complex treatment regimens.

Access to information that is authentic and tailored

specically to the needs of the individual and the community

is the aim. e challenge is recognized acutely in more

remote and low- to middle-income countries of the world,

specically the importance of culturally appropriate

knowledge provision. e principals of improving health

literacy are the same, but understanding how to proceed,

and putting consumers in charge, with a codesign approach,

is critical and may result in a dierent outcome in more

remote parts of the world. is principal especially applies

to communities that are smaller, with less access to

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TABLE 1. Summary characteristic of kidney health promotion, involving kidney health–centered policy, community

kidney health planning, and kidney health literacy, and proposed future direction.

Kidneyhealth Denition Stakeholders Currentstatus Limitations/ Suggestedsolutions

promotion challenges /future research

Kidney

health-

centered

policy

Community

kidney health

planning

Kidney

health

literacy

• Incorporate

kidney health

into policy

decision

making

• Prioritize

policies with

primary

prevention for

CKD

• Building up

preventive

strategies to

promote healthy

communities and

primary health

care facilities

• Receive

knowledge,

skills, and

information to

be healthy

• Governance

• Policy makers

• Insurance

agencies

• Community

leadership

• Kidney patient

advocacy

• People with

CKD

• Care partners

• Health care

providers

• Policy

emphasizing

treatment for

CKD and kidney

failure rather

than kidney

health

prevention

• Belief in

community

leaders in LMIC

• Lack of

awareness of

CKD and risk

factors

• Care partner

burden and

burnout

• Inadequate

health care

workers

• High patients-to-

health care

workers ratio,

especially in

rural areas

• Economic-

driven situation

challenging

CKD risk factor

minimization

(e.g., food

policy)

• Education and

understanding

kidney health

promotion of

community

leadership and

people

• Inadequate

policy direction

• Ineffective

health care

providers’

communication

skills

• Promote implementation

of public health program

for primary CKD prevention

• Promote sustainable

treatment for CKD and

dialysis

- Increase kidney

transplant awareness

- Enhance visibility and

encourage brother-sister

nephrology and transplant

program in LMIC

• Support research

funding from government

- Health care cost-

effectiveness for caring

for CKD

- Kidney failure,

including maintenance

dialysis and transplant

- Promote surveillance

programs for kidney

diseases and their

risk factors

• Improve role model of

community

• Enhance kidney support

networks

• Organizational paradigm

shift toward health

literacy

• Improving communication

between health care

providers with patients

and care partners

•

Using teach-back methods

for consumer education

• Adapting technologies for

appropriate health

literacy and sociocultural

environments

• Family engagement in

the patient care

• Incentive for community

health care providers in

rural areas

Abbreviations: CKD = chronic kidney disease; LMIC = low- to middle-income country.

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electronic communication and health care services,

where the level of health literacy is shared across the

community and where what aects the individual also

aects all the community. Decision support systems are

dierent, led by elders, and in turn educational resources

are best aimed at improving knowledge of the whole

community.

A systematic review of the evaluation of interventions

and strategies shows this area of research is still at an

early stage,

with no studies unravelling the link between

LHL and poor CKD outcomes. e best evidence is in

supporting targeted programs on improving communication

capabilities of health care professionals as central. One

prime example is Teach-back, a cyclical, simple, low-cost

education intervention, shows promise for improving

communication, knowledge, and self-management in the

CKD populations in low- or high-income countries.

Furthermore, the consumer-led voice has articulated

research priorities that align closely with principals

felt to be important to success of education: building

new education resources, devised in partnership with

consumers, and focused on the needs of vulnerable groups.

Indeed, programs that address the lack of culturally safe,

person-centred and holistic care, along with improving

the communication skills of health professionals, are

crucial for those with CKD.

e networked community of kidney health care workers

Nonphysician health care workers, including nurses

and advanced practice providers (physician assistants and

nurse practitioners) as well as dietitians, pharmacists, social

workers, technicians, physical therapists, and other allied

health professionals, oen spend more time with persons

with kidney disease, compared with nephrologists and

other physician specialists. In an ambulatory care setting

at an appointment, in the emergency department, or in

the inpatient setting, these health care professionals oen

see and relate to the patient rst, last, and in between,

given that physician encounters are oen short and

focused. Hence, the nonphysician health care workers

have many opportunities to discuss kidney disease-related

topics with the individuals and their care partners and

to empower them.

17,18

For instance, medical assistants

can help identify those with or at risk of developing

CKD and can initiate educating them and their family

members about the role of diet and lifestyle modication

for primary, secondary, and tertiary prevention of CKD

while waiting to see the physician.

Some health care

workers provide networking and support for kidney

patient advocacy groups and kidney support networks,

which have been initiated or expanded via social media

platforms (Fig1).

20,21

Studies examining the ecacy of

social media in kidney care and advocacy are on the

way.

22,23

Like physicians, many activities of nonphysician

health care workers have been increasingly aected by

the rise of electronic health recording and growing access

to internet-based resources, including social media, that

oer educational materials related to kidney health,

including kidney-preserving therapies with traditional

and emerging interventions.

ese resources can be used

for both self-education and for networking and advocacy

on kidney disease awareness and learning. Increasingly,

more health care professionals are engaged in some types

of social media-based activities, as shown in Table2. At

the time of this writing, the leading social media used

Fig 1. Schematic representation of

consumer and health care professionals’

collaborative advocacy using social

media platforms with the goal of

Kidney Health for All.

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by many-but not all-kidney health care workers include

Facebook, Instagram, Twitter, LinkedIn, and YouTube.

In some regions of the world, certain social media are

more frequently used than others given unique cultural

or access constellations (e.g., WeChat is a platform oen

used by health care workers and patient groups in China).

Some health care professionals, such as managers and

those in leadership and advocacy organization positions,

may choose to embark onsocial media to engage those

with CKD and their care partners or other health care

professionals in alliance building and marketing. To that

end, eective communication strategies and outreach skills

specic to responsible use of social media can provide

clear advantages given that these skills and strategies

are dierent and may need modication in those with

LHL. It is imperative to ensure the needed knowledge

and training for accountable approach to social media is

provided to health care providers, so that these outreach

strategies are utilized with the needed awareness of their

unique strengths and pitfalls, as follows

(i) Consumers’ and care partners’ condentiality may

not be breached upon posting anything on social

media, including indirect referencing to a specic

individual or a particular description of a condition

unique to a specic person (e.g., upon soliciting

for transplant kidney donors on social media).

26,27

(ii) Condential information about clinics, hospitals,

dialysis centers, or similar health care and advocacy

TABLE 2. Social media that are more frequently used for kidney education and advocacy.

Social media Strength Limitations Additional comments

Facebook

Instagram

Twitter

YouTube

WeChat

Frequently used social media

platform by many kidney

patients and patient groups

Photo-predominating platform

Often used by physician

specialists and scientists,

including nephrologists

More often used by

professionals, including in

industry

Video-predominating platform

Widely used in mainland China

Picture-based, often used by

dietitians

►

Widely used for entertaining

purposes, which can dilute its

professional utility

Not frequently used by health

care professionals

Less frequently used by

patients and care partners

Originally designed for

employment and job-seeking

networking

Less effective with non–

video-based formats

Access is often limited to those

living in China or its diaspora

Currently limited use by some

health care workers

User-friendly platform for

kidney advocacy, enabling

wide ranges of outreach goals

Picture friendly, potentially

effective for illustrative

educational purposes

Increasing popularity among

physician and specialty circles

Mostly effective to reach out

to industry and managerial

professionals

Wide ranges of outreach and

educational targets

Effective platform to reach out

to patients and health care

professionals in China

Useful for dietary and lifestyle

education

Other 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 messaging apps include,

but not limited to, WhatsApp, Zoom, Facebook Messengers, Skype Teams, and Slack.

Note: at platforms that are more oen used as internet-based messaging are not included.

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entities may not be disclosed on social media

without ensuring that the needed processes,

including collecting authorizations to disclose,

are undertaken.

(iii)Health care workers’ job security and careers

should remain protected with thorough review

of the content of the messages and illustrations/

videos before online posting.

(iv) Careless and disrespectful language and emotional

tones are oen counterproductive and may not

be justied under the context of freedom of

speech.

e global kidney community of policy and advocacy

Policy and advocacy are well-recognized tools that, if

properly deployed, can bring about change and paradigm

shi at jurisdictional level. e essence of advocating

for policy change to better address kidney disease is,

in itself, an exercise in improving health literacy of

the policy makers. Policy development, at its core, is a

key stakeholder or stakeholder group (e.g., the kidney

community, who believes that a problem exists that should

be tackled through governmental action). ere is an

increasing recognition of the importance of formulating

succinct, meaningful, and authentic information, akin

to improving health literacy, to present to government

for action.

Robust and ecacious policy is always underpinned

by succinct and applicable information; however, 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 process is important to clinicians who

are aiming to advocate for eective change in prevention

or improvement of outcomes in the CKD community.

Public policies, the plans for future action accepted

by governments, are articulated through a political process

in response stakeholder observation, usually written as a

directive, law, regulation, procedure, or circular. Policies

are purpose t and targeted to dened goals and specic

societal problems and are usually a chain of actions

eected to solve those societal problems.

Policies are an

important output of political systems. Policy development

can be formal, passing through rigorous lengthy processes

before adoption (such as regulations), or it can be less

formal and quickly adopted (such as circulars). As already

mentioned, the governmental action envisaged by the

key stakeholders as solution to a problem is at its core.

e process enables stakeholders to air their views and

bring their concerns to the fore. Authentic information

that is meaningful to the government is critical. e

policy development process can be stratied into 5 stages

(i.e., the policy cycle), as depicted by Anderson (1994)

and adapted and modied by other authors

(Fig2).

Fig 2. Policy cycle involving 5 stages of policy development.

Abbreviations: CKD=chronic kidney disease; KRT=kidney replacement therapy; LGA=local government area.

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e policy cycle constitutes an expedient framework for

evaluating the key components of the process.

Subsequently, the policy moves on to implementation

phase. This phase may require subsidiary policy

development and adoption of new regulations or budgets

(implementation). Policy evaluation is integral to the

policy processes and applies evaluation principles and

methods to assess the content, implementation, or impact

of a policy. Evaluation facilitates understanding and

appreciation of the worth and merit of a policy as well

as the need for its improvement. More important, of the

5 principles of advocacy that underline policy making,

the most important for clinicians engaged in this space is

that of commitment, persistence, and patience. Advocacy

takes time to yield the desired results.

e Advocacy Planning Framework, developed

by Young and Quinn in 2002,

consists of overlapping

circles representing 3 sets of concepts (way into the

process, the messenger, and message and activities) that

are key to planning any advocacy campaign:

(i) “Way into the process”: discusses the best

approaches to translate ideas into the target policy

debate and identify the appropriate audience to

target.

(ii) Messenger: talks about the image maker or face

of the campaign and other support paraphernalia

that are needed.

(iii) Message and activities: describe what can be

said to the key target audiences that is engaging

and convincing. And how best it can be

communicated through appropriate communication

tools.

Advocacy is defined as “an effort or campaign

with a structured and sequenced plan of action which

starts, directs, or prevents a specic policy change.”

e goal being to inuence decision makers through

communicating directly with them or getting their

commitment through secondary audiences (advisers,

the media, or the public) to the end that the decision

maker understands, is convinced, takes ownership of the

ideas, and nally has the compulsion to act.

As with

improving health literacy, it is the communication of

ideas to policy makers for adoption and implementation

as policy that is key. ere 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 where they are

needed. Again, aligned with the principles of developing

resources for health literacy, the approach also needs to

be nuanced according to the local need, aiming to have

the many good ideas and solutions be communicated

to communities and countries where they are needed.

Advocacy requires galvanizing momentum and

support for the proposed policy or recommendation. e

process is understandably slow as it involves discussions

and negotiations for paradigms, attitudes, and positions to

shi. In contemplating advocacy activities, multiple factors

must be considered, interestingly not too dissimilar to that

of building health literacy resources: What obstructions

are disrupting the policy-making process from making

progress? What resources are available to enable the

process to succeed? Is the policy objective achievable

considering all variables? Is the identied problem already

being considered by 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 is likely to succeed.

Approaches to choose from include the following

31,32

• Advising (researchers are commissioned to

produce new evidence-based proposals to assist

the organization in decision making).

• Activism: involves petitions, public demonstrations,

posters, iers, and leaet dissemination, oen

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 eective and successful

advocacy to stakeholders, including policy makers, health

care professionals, communities, and key change makers

in society. e WKD, since inception, has aimed at playing

this role. WKD has gained people’s trust by delivering

relevant and accurate messaging and supporting leaders

in local engagement, and it is celebrated by kidney care

professionals, celebrities, those with the disease, and their

care givers all over the world. To achieve the goal, an

implementation framework of success in a sustainable way

includes creativity, collaboration, and communication.

e 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 how to

collate key insights from research and analysis to eectively

feed the policy-making process at the local, national,

and international levels, to inform or guide decision

making (i.e., increasing engagement of governments

and organizations, like World Health Organization,

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United Nations, and regional organizations, especially in

low-resource settings). ere is a clear need for ongoing

renewal of strategies to increase eorts at closing gap in

kidney health literacy, empowering those aected with

kidney disease and their families, giving them a voice

to be heard, and engaging with the civil society. is

year, the Joint Steering Committee of WKD declares

“Kidney Health for All” as the theme of the 2022 WKD

to emphasize and extend collaborative eorts among

people with kidney disease, their care partners, health

care providers, and all involving stakeholders for elevating

education and awareness on kidney health and saving

lives with this disease.

CONCLUSION

In bridging the gap of knowledge to improve outcomes

for those with kidney disease on a global basis, an in-

depth understanding of the needs of the community is

required. e same can be said for policy development,

understanding the processes in place for engagement of

governments worldwide, all underpinned by the important

principal of codesign of resources and policy that meets

the needs of the community for which it is intended.

For World Kidney Day 2022, kidney organizations,

including the International Society of Nephrology and

International Federation of Kidney Foundations-World

Kidney Alliance, have a responsibility to immediately

work toward shiing the patient-decit health literacy

narrative to that of being the responsibility of clinicians

and health policy makers. LHL occurs in all countries

regardless of income status; hence, simple, low-cost

strategies are likely to be eective. Communication,

universal precautions, and teach back can be implemented

by all members of the kidney health care team. rough

this vision, kidney organizations will lead the shi to

improved patient-centered care, support for care partners,

health outcomes, and the global societal burden of kidney

health care.

Conict of Interest disclosure

KK-Z reports honoraria from Abbott, Abbvie, ACI

Clinical, Akebia, Alexion, Amgen, Ardelyx, AstraZeneca,

Aveo, BBraun, Cara erapeutics, Chugai, Cytokinetics,

Daiichi, DaVita, Fresenius, Genentech, Haymarket Media,

Hospira, Kabi, Keryx, Kissei, Novartis, Pzer, Regulus,

Relypsa, Resverlogix, Dr Schaer, Sandoz, Sano, Shire,

Vifor, UpToDate, and ZS-Pharma.

VL reports nonfinancial support from Genesis

Pharma.

GS reports personal fees from Multicare, Novartis,

Sandoz, and AstraZeneca.

ET reports nonnancial support from Natera.

All the other authors declared no competing interests.

APPENDIX

e World Kidney Day Joint Steering Committee

includes coauthors Robyn G. Langham, Kamyar

Kalantar-Zadeh, Alessandro Balducci, Li-Li Hsiao,

Latha A. Kumaraswami, Paul Lan, Vassilios Li

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