Advertisement

Kidney Health for All: Bridging the Gap in Kidney Health Education and Literacy

Published:February 27, 2022DOI:https://doi.org/10.1053/j.jrn.2022.02.005

      Introduction

      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-identified gap in the global understanding of kidney disease and its health literacy is the theme for World Kidney Day (WKD) 2022. Health literacy is defined 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 inform health-related decisions and actions for themselves and others.
      Centers for Disease Control and Prevention
      Healthy people 2030: what is health literacy?.
      Not only is there a growing recognition of the role that health literacy has in determining outcomes for persons affected by kidney disease and the community in general, but there is also an emergent imperative for policy makers worldwide to be informed and cognizant of opportunities and real measurable outcomes that can be achieved through kidney-specific preventative strategies.

      The 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 afflicted by disease and the subsequent effects on overall health, an effective healthcare 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.
      • Nutbeam D.
      The evolving concept of health literacy.
      It is also contextual
      • Lloyd A.
      • Bonner A.
      • Dawson-Rose C.
      The health information practices of people living with chronic health conditions: Implications for health literacy.
      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 among individuals, healthcare providers, and health policy makers.
      • Sorensen K.
      • Van den Broucke S.
      • Fullam J.
      • et al.
      Health literacy and public health: a systematic review and integration of definitions and models.
      This is why the imperatives around health literacy are now recognized as indicators for the quality of local and national healthcare systems and healthcare professionals within it.
      • Nutbeam D.
      • Lloyd J.E.
      Understanding and Responding to health literacy as a social determinant of health.
      For chronic kidney disease (CKD), as the disease progresses alongside other health changes and increasing treatment complexities, it becomes more difficult for individuals to manage.
      • Mathias-Shah J.
      • Ramsbotham J.
      • Seib C.
      • Muir R.
      • Bonner A.
      A scoping review of the role of health literacy in chronic kidney disease self-management.
      Promoted in health policy for around a decade involving care partnerships among health-centered policy, community health planning, and health literacy,
      • Dinh H.T.T.
      • Nguyen N.T.
      • Bonner A.
      Healthcare systems and professionals are key to improving health literacy in chronic kidney disease.
      current approaches need to be shifted forward (Table 1).
      Table 1Summary Characteristic of Kidney Health Promotion, Involving Kidney Health–Centered Policy, Community Kidney Health Planning, and Kidney Health Literacy, and Proposed Future Direction
      Kidney Health PromotionDefinitionStakeholdersCurrent StatusLimitations/ChallengesSuggested Solutions/Future Research
      Kidney health–centered policyIncorporate kidney health into policy decision-making

      Prioritize policies with primary prevention for CKD
      Governance

      Policy makers

      Insurance agencies
      Policy emphasizing treatment for CKD and kidney failure rather than kidney health preventionEconomic-driven situation challenging CKD risk factor minimization (e.g., food policy)
      • 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
        • Healthcare cost-effectiveness for caring for CKD
        • Kidney failure, including maintenance dialysis and transplant
        • Promote surveillance programs for kidney diseases and their risk factors
      Community kidney health planningBuilding up preventive strategies to promote healthy communities and primary healthcare facilitiesCommunity leadership

      Kidney patient advocacy
      Belief in community leaders in LMICEducation and understanding kidney health promotion of community leadership and peopleImprove role model of community

      Enhance kidney support networks
      Kidney health literacyReceive knowledge, skills, and information to be healthyPeople with CKD

      Care partners

      Healthcare providers
      Lack of awareness of CKD and risk factors

      Care partner burden and burnout

      Inadequate healthcare workers

      High patient-to-healthcare workers ratio, especially in rural areas
      Inadequate policy direction

      Ineffective healthcare providers' communication skills
      Organizational paradigm shift toward health literacy

      Improving communication between healthcare 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 healthcare providers in rural areas
      CKD, chronic kidney disease; LMIC, low- to middle-income country.
      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).
      • Dobson S.
      • Good S.
      • Osborne R.
      Health literacy toolkit for low and middle-income countries: A series of information sheets to empower communities and strengthen health systems.
      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.
      • Dinh H.T.T.
      • Nguyen N.T.
      • Bonner A.
      Healthcare systems and professionals are key to improving health literacy in chronic kidney disease.
      Unfortunately, most CKD studies have measured only functional health literacy, so the evidence that LHL results in poorer outcomes, particularly that it increases healthcare utilization and mortality,
      • Taylor D.M.
      • Fraser S.
      • Dudley C.
      • et al.
      Health literacy and patient outcomes in chronic kidney disease: a systematic review.
      and reduces access to transplantation,
      • Taylor D.M.
      • Bradley J.A.
      • Bradley C.
      • et al.
      Limited health literacy is associated with reduced access to kidney transplantation.
      is weak.
      Recently, health literacy is now considered to be an important bridge between lower socioeconomic status and other social determinants of health.
      • Sorensen K.
      • Van den Broucke S.
      • Fullam J.
      • et al.
      Health literacy and public health: a systematic review and integration of definitions and models.
      Indeed, this is not a feature that can be measured by the gross domestic product of a country, as the effects of LHL on the extent of CKD in the community are experienced globally regardless of country income status. The lack of awareness of risk factors of kidney disease, even in those with high health literacy abilities, is testament to the difficulties in understanding this disease, and why the United States, for instance, recommends that a universal precaution approach toward health literacy is undertaken.
      • Brega A.G.
      • Barnard J.
      • Mabachi N.M.
      • et al.
      AHRQ Health Literacy Universal Precautions Toolkit.
      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 shifted to policy directives, organizational culture, and healthcare providers. In Australia, for instance, a compulsory health literacy accreditation standard makes the healthcare organization responsible for ensuring that providers are cognizant of individual health literacy abilities.
      Australian Commission on Safety and Quality in Health Care
      Health literacy: Taking action to improve safety and quality. Sydney: ACSQHC.
      Although many high-income countries, healthcare 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. There is, however, substantial evidence that interventions improving healthcare provider communication are more likely to improve understanding of health problems and abilities to adhere to complex treatment regimens.
      • Visscher B.B.
      • Steunenberg B.
      • Heijmans M.
      • et al.
      Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.
      Access to information that is authentic and tailored specifically to the needs of the individual and the community is the aim. The challenge is recognized acutely in more remote and low- to middle-income countries of the world, specifically the importance of culturally appropriate knowledge provision. The 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 different outcome in more remote parts of the world. This principal especially applies to communities that are smaller, with less access to electronic communication and healthcare services, where the level of health literacy is shared across the community and what affects the individual also affects all the communities. Decision support systems are different, 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,
      • Boonstra M.D.
      • Reijneveld S.A.
      • Foitzik E.M.
      • Westerhuis R.
      • Navis G.
      • de Winter A.F.
      How to tackle health literacy problems in chronic kidney disease patients? A systematic review to identify promising intervention targets and strategies.
      with no studies unraveling the link between LHL and poor CKD outcomes. The best evidence is in supporting targeted programs on improving communication capabilities of healthcare professionals as central. One prime example is Teach-back, a cyclical, simple, low-cost education intervention which shows promise for improving communication, knowledge, and self-management in the CKD populations in low- or high-income countries.
      • Nguyen N.T.
      • Douglas C.
      • Bonner A.
      Effectiveness of self-management programme in people with chronic kidney disease: a pragmatic randomized controlled trial.
      Furthermore, the consumer-led voice has articulated research priorities that align closely with principals felt to be important to the 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-centered and holistic care, along with improving the communication skills of health professionals, are crucial for those with CKD.
      • Synnot A.
      • Bragge P.
      • Lowe D.
      • et al.
      Research priorities in health communication and participation: international survey of consumers and other stakeholders.

      The Networked Community of Kidney Healthcare Workers

      Nonphysician healthcare 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, often 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 healthcare professionals often see and relate to the patient first, last, and in between, given that physician encounters are often short and focused. Hence, the nonphysician healthcare workers have many opportunities to discuss kidney disease–related topics with the individuals and their care partners and to empower them.
      • Kalantar-Zadeh K.
      • Kam-Tao Li P.
      • Tantisattamo E.
      • et al.
      Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere.
      ,
      • Jager K.J.
      • Kovesdy C.
      • Langham R.
      • Rosenberg M.
      • Jha V.
      • Zoccali C.
      A single number for advocacy and communication-worldwide more than 850 million individuals have kidney diseases.
      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 modification for primary, secondary, and tertiary prevention of CKD while waiting to see the physician.
      • Li P.K.
      • Garcia-Garcia G.
      • Lui S.F.
      • et al.
      Kidney health for everyone everywhere-from prevention to detection and equitable access to care.
      Some healthcare 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).
      • Gilford S.
      Patients helping patients: the renal support network.
      ,
      • Muhammad S.
      • Allan M.
      • Ali F.
      • Bonacina M.
      • Adams M.
      The renal patient support group: supporting patients with chronic kidney disease through social media.
      Studies examining the efficacy of social media in kidney care and advocacy are on the way.
      • Li W.Y.
      • Chiu F.C.
      • Zeng J.K.
      • et al.
      Mobile health app with social media to support self-management for patients with chronic kidney disease: Prospective randomized controlled Study.
      ,
      • Pase C.
      • Mathias A.D.
      • Garcia C.D.
      • Garcia Rodrigues C.
      Using social media for the promotion of education and Consultation in Adolescents who have Undergone kidney transplant: Protocol for a randomized Control trial.
      Figure thumbnail gr1
      Figure 1Schematic representation of consumer and healthcare professionals' collaborative advocacy using social media platforms with the goal of Kidney Health for All.
      Like physicians, many activities of nonphysician healthcare workers have been increasingly affected by the rise in electronic health recording and growing access to internet-based resources, including social media, that offer educational materials related to kidney health, including kidney-preserving therapies with traditional and emerging interventions.
      • Kalantar-Zadeh K.
      • Jafar T.H.
      • Nitsch D.
      • Neuen B.L.
      • Perkovic V.
      Chronic kidney disease.
      These resources can be used for both self-education and for networking and advocacy on kidney disease awareness and learning. Increasingly, more healthcare 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 by many—but not all—kidney healthcare 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 often used by healthcare workers and patient groups in China). Some healthcare 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 healthcare professionals in alliance building and marketing. To that end, effective communication strategies and outreach skills specific to responsible use of social media can provide clear advantages given that these skills and strategies are different and may need modification in those with LHL. It is imperative to ensure that the needed knowledge and training for accountable approach to social media is provided to healthcare providers, so that these outreach strategies are utilized with the needed awareness of their unique strengths and pitfalls, as follows
      • Chen L.
      • Sivaparthipan C.B.
      • Rajendiran S.
      Unprofessional problems and potential healthcare risks in individuals' social media use.
      :
      • 1.
        Consumers' and care partners' confidentiality may not be breached upon posting anything on social media, including indirect referencing to a specific individual or a particular description of a condition unique to a specific person (e.g., upon soliciting for transplant kidney donors on social media).
        • Henderson M.L.
        • Herbst L.
        • Love A.D.
        Social media and kidney transplant Donation in the United States: clinical and Ethical Considerations when Seeking a living donor.
        ,
        • Henderson M.L.
        Social media in the Identification of living kidney donors: platforms, tools, and strategies.
      • 2.
        Confidential information about clinics, hospitals, dialysis centers, or similar health care and advocacy entities may not be disclosed on social media without ensuring that the needed processes, including collecting authorizations to disclose, are undertaken.
      • 3.
        Healthcare workers' job security and careers should remain protected with thorough review of the content of the messages and illustrations/videos before online posting.
      • 4.
        Careless and disrespectful language and emotional tones are often counterproductive and may not be justified under the context of freedom of speech.
      Table 2Social Media That Are More Frequently Used for Kidney Education and Advocacy
      Social MediaStrengthLimitationsAdditional Comments
      FacebookFrequently used social media platform by many kidney patients and patient groupsWidely used for entertaining purposes, which can dilute its professional utilityUser-friendly platform for kidney advocacy, enabling wide ranges of outreach goals
      InstagramPhoto-predominating platformNot frequently used by healthcare professionalsPicture friendly, potentially effective for illustrative educational purposes
      TwitterOften used by physician specialists and scientists, including nephrologistsLess frequently used by patients and care partnersIncreasing popularity among physician and specialty circles
      LinkedInMore often used by professionals, including in industryOriginally designed for employment and job-seeking networkingMostly effective to reach out to industry and managerial professionals
      YouTubeVideo-predominating platformLess effective with non–video-based formatsWide ranges of outreach and educational targets
      WeChatWidely used in mainland ChinaAccess is often limited to those living in China or its diasporaEffective platform to reach out to patients and healthcare professionals in China
      PinterestPicture-based, often used by dietitiansCurrently limited use by some healthcare workersUseful for dietary and lifestyle education
      Other popular social media at the time of this publication include, but not limited to, TikTok, 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 that platforms that are more often used as internet-based messaging are not included.

      The Global Kidney Community of Policy and Advocacy

      Policy and advocacy are well-recognized tools that, if properly deployed, can bring about change and paradigm shift at the jurisdictional level. The 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). There is an increasing recognition of the importance of formulating succinct, meaningful, and authentic information, akin to improving health literacy, to present to the government for action.
      Robust and efficacious 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 effective 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 to stakeholder observation, usually written as a directive, law, regulation, procedure, or circular. Policies are purpose fit and targeted to defined goals and specific societal problems and are usually a chain of actions effected 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. The process enables stakeholders to air their views and bring their concerns to the fore. Authentic information that is meaningful to the government is critical. The policy development process can be stratified into 5 stages (i.e., the policy cycle), as depicted by Anderson (1994)
      • Anderson J.E.
      Public Policymaking: An Introduction.
      and adapted and modified by other authors
      (Fig. 2). The policy cycle constitutes an expedient framework for evaluating the key components of the process.
      Figure thumbnail gr2
      Figure 2Policy cycle involving 5 stages of policy development. CKD, chronic kidney disease; KRT, kidney replacement therapy; LGA, local government area.
      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.
      The 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:
      • 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: 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 specific policy change.”
      The goal being to influence 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 finally 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. 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 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. The process is understandably slow as it involves discussions and negotiations for paradigms, attitudes, and positions to shift. 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 identified 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
      ,
      • Start D.
      • Hovland I.
      Tools for Policy Impact: A Handbook for Researchers, Research and Policy in Development Programme.
      :
      • Advising: researchers are commissioned to produce new evidence-based proposals to assist the organization 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 to stakeholders, including policy makers, healthcare professionals, communities, and key change makers in society. The 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.
      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 how to collate key insights from research and analysis to effectively 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, United Nations, and regional organizations, especially in low-resource settings). There is a clear need for ongoing 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 to be heard, and engaging with the civil society. This year, the Joint Steering Committee of WKD declares “Kidney Health for All” as the theme of the 2022 WKD to emphasize and extend collaborative efforts among people with kidney disease, their care partners, healthcare providers, and all involving stakeholders for elevating education and awareness on kidney health and saving lives with this disease.

      Conclusions

      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. The 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 WKD 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 shifting the patient-deficit 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 effective. Communication, universal precautions, and teach-back can be implemented by all members of the kidney healthcare team. Through this vision, kidney organizations will lead the shift to improved patient-centered care, support for care partners, health outcomes, and the global societal burden of kidney health care.

      References

        • Centers for Disease Control and Prevention
        Healthy people 2030: what is health literacy?.
        • Nutbeam D.
        The evolving concept of health literacy.
        Soc Sci Med. 2008; 67: 2072-2078
        • Lloyd A.
        • Bonner A.
        • Dawson-Rose C.
        The health information practices of people living with chronic health conditions: Implications for health literacy.
        J Librarianship Inf Sci. 2014; 46: 207-216
        • Sorensen K.
        • Van den Broucke S.
        • Fullam J.
        • et al.
        Health literacy and public health: a systematic review and integration of definitions and models.
        BMC Public Health. 2012; 12: 80
        • Nutbeam D.
        • Lloyd J.E.
        Understanding and Responding to health literacy as a social determinant of health.
        Annu Rev Public Health. 2021; 42: 159-173
        • Mathias-Shah J.
        • Ramsbotham J.
        • Seib C.
        • Muir R.
        • Bonner A.
        A scoping review of the role of health literacy in chronic kidney disease self-management.
        J Ren Care. 2021; 47: 221-233
        • Dinh H.T.T.
        • Nguyen N.T.
        • Bonner A.
        Healthcare systems and professionals are key to improving health literacy in chronic kidney disease.
        J Ren Care. 2022; 48: 4-13
        • Dobson S.
        • Good S.
        • Osborne R.
        Health literacy toolkit for low and middle-income countries: A series of information sheets to empower communities and strengthen health systems.
        World Health Organization, New Delhi2015
        • Taylor D.M.
        • Fraser S.
        • Dudley C.
        • et al.
        Health literacy and patient outcomes in chronic kidney disease: a systematic review.
        Nephrol Dial Transpl. 2018; 33: 1545-1558
        • Taylor D.M.
        • Bradley J.A.
        • Bradley C.
        • et al.
        Limited health literacy is associated with reduced access to kidney transplantation.
        Kidney Int 05. 2019; 95: 1244-1252
        • Brega A.G.
        • Barnard J.
        • Mabachi N.M.
        • et al.
        AHRQ Health Literacy Universal Precautions Toolkit.
        in: 15-0023-EF. Second Edition. Agency for Healthcare Research and Quality, Rockville, MD2015 (Prepared by Colorado Health Outcomes Program, University of Colorado Anschutz Medical Campus under Contract No. HHSA290200710008, TO#10.) AHRQ Publication No.
        • Australian Commission on Safety and Quality in Health Care
        Health literacy: Taking action to improve safety and quality. Sydney: ACSQHC.
        • Visscher B.B.
        • Steunenberg B.
        • Heijmans M.
        • et al.
        Evidence on the effectiveness of health literacy interventions in the EU: a systematic review.
        BMC Public Health. 2018; 18: 1414
        • Boonstra M.D.
        • Reijneveld S.A.
        • Foitzik E.M.
        • Westerhuis R.
        • Navis G.
        • de Winter A.F.
        How to tackle health literacy problems in chronic kidney disease patients? A systematic review to identify promising intervention targets and strategies.
        Nephrol Dial Transpl. 2020;
        • Nguyen N.T.
        • Douglas C.
        • Bonner A.
        Effectiveness of self-management programme in people with chronic kidney disease: a pragmatic randomized controlled trial.
        J Adv Nurs. 2019; 75: 652-664
        • Synnot A.
        • Bragge P.
        • Lowe D.
        • et al.
        Research priorities in health communication and participation: international survey of consumers and other stakeholders.
        BMJ Open. 2018; 8: e019481
        • Kalantar-Zadeh K.
        • Kam-Tao Li P.
        • Tantisattamo E.
        • et al.
        Living well with kidney disease by patient and care-partner empowerment: kidney health for everyone everywhere.
        Kidney Int. 2021; 99: 278-284
        • Jager K.J.
        • Kovesdy C.
        • Langham R.
        • Rosenberg M.
        • Jha V.
        • Zoccali C.
        A single number for advocacy and communication-worldwide more than 850 million individuals have kidney diseases.
        Kidney Int. 2019; 96: 1048-1050
        • Li P.K.
        • Garcia-Garcia G.
        • Lui S.F.
        • et al.
        Kidney health for everyone everywhere-from prevention to detection and equitable access to care.
        Kidney Int. 2020; 97: 226-232
        • Gilford S.
        Patients helping patients: the renal support network.
        Nephrol Nurs J. 2007; 34: 76
        • Muhammad S.
        • Allan M.
        • Ali F.
        • Bonacina M.
        • Adams M.
        The renal patient support group: supporting patients with chronic kidney disease through social media.
        J Ren Care. 2014; 40: 216-218
        • Li W.Y.
        • Chiu F.C.
        • Zeng J.K.
        • et al.
        Mobile health app with social media to support self-management for patients with chronic kidney disease: Prospective randomized controlled Study.
        J Med Internet Res. 2020; 22: e19452
        • Pase C.
        • Mathias A.D.
        • Garcia C.D.
        • Garcia Rodrigues C.
        Using social media for the promotion of education and Consultation in Adolescents who have Undergone kidney transplant: Protocol for a randomized Control trial.
        JMIR Res Protoc. 2018; 7: e3
        • Kalantar-Zadeh K.
        • Jafar T.H.
        • Nitsch D.
        • Neuen B.L.
        • Perkovic V.
        Chronic kidney disease.
        Lancet. 2021;
        • Chen L.
        • Sivaparthipan C.B.
        • Rajendiran S.
        Unprofessional problems and potential healthcare risks in individuals' social media use.
        Work. 2021; 68: 945-953
        • Henderson M.L.
        • Herbst L.
        • Love A.D.
        Social media and kidney transplant Donation in the United States: clinical and Ethical Considerations when Seeking a living donor.
        Am J Kidney Dis. 2020; 76: 583-585
        • Henderson M.L.
        Social media in the Identification of living kidney donors: platforms, tools, and strategies.
        Curr Transpl Rep. 2018; 5: 19-26
      1. Newton K. van Deth J.W. Foundations of Comparative Politics Democracies of the Modern World. 2nd ed. Cambridge University Press, Cambridge, UK2010
        • Anderson J.E.
        Public Policymaking: An Introduction.
        2nd ed. Houghton Mifflin, Boston, MA1994
      2. Young E. Quinn L. Writing Effective Public Policy Papers: A Guide to Policy Advisers in Central and Eastern Europe. Open Society Institute, Budapest, Hungary2002
      3. Young E. Quinn L. Making Research Evidence Matter: A Guide to Policy Advocacy in Transition Countries. Open Society Foundations, Budapest, Hungary2012
        • Start D.
        • Hovland I.
        Tools for Policy Impact: A Handbook for Researchers, Research and Policy in Development Programme.
        Overseas Development Institute, London, UK2004