Kidney Health For All: Bridging The Gap in Kidney Health Education And Literacy Ⅱ

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 the health literacy of policymakers. Policy development, at its core, is a key stakeholder or stakeholder group (e.g., the kidney community, which 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.

The 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 specifific societal problems and are usually a chain of actions effected to solve those societal problems.28 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 a 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)29 and adapted and modified by other authors (Fig. 2). The policy cycle constitutes an expedient framework for evaluating the key components of the process.

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Subsequently, the policy moves on to the implementation phase. This phase may require subsidiary policy development and the 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 importantly, of the 5 principles of advocacy that underline policy making,31 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 2002,30 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 specifific policy change.’’31 The goal is to influence decision-makers by 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.31 As with improving health literacy, it is the communication of ideas to policymakers for adoption and implementation as a policy that is key. There is much to be done to bridge this gap in understanding of the magnitude of the 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 policymakers (government or multinational organizations)? Any interest or momentum generated around it? Understandably, if there is some level of interest and if the government already has its spotlight on the issue, it is likely to succeed. 

Approaches to choose from include the following:

Advising: Researchers are commissioned to produce new evidence-based proposals to assist the organization in decision-making.

Activism: involves petitions, public demonstrations, posters, flyers, 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 policymakers, healthcare professionals, communities, and key change-makers in society. The WKD, since its inception, has aimed to play 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 caregivers 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 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 involved 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 the engagement of governments worldwide, all underpinned by the important principle 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 policymakers. 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 

1. Centers for Disease Control and Prevention. Healthy People 2030: What is health literacy? https://www.cdc.gov/healthliteracy/learn/index.html. Accessed January 16, 2022. 

2. Nutbeam D. The evolving concept of health literacy. Soc Sci Med. 2008;67:2072-2078.

3. 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. 

4. 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. 

5. Nutbeam D, Lloyd JE. Understanding and Responding to health literacy as a social determinant of health. Annu Rev Public Health. 2021;42:159-173.

6. 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. 

7. Dinh HTT, Nguyen NT, Bonner A. Healthcare systems and professionals are key to improving health literacy in chronic kidney disease. J Ren Care. 2022;48:4-13. 

8. 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. New Delhi: World Health Organization; 2015.

9. Taylor DM, 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. 

10. Taylor DM, Bradley JA, Bradley C, et al. Limited health literacy is associated with reduced access to kidney transplantation. Kidney Int 05. 2019;95:1244-1252.

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