This is the best way to realize better health outcomes. Patient engagement is essential in creating effective healthcare strategies. By listening to patients, healthcare systems can better address the needs of those with chronic illnesses.
This article explores the importance of patient engagement in kidney health, drawing from Richard Knight's "A Patient's Perspective on Advancing American Kidney Health Initiative " and from Dr Ifeoma Ulasi, International Society of Nephrology (ISN) Advocacy Work Group Deputy Chair's "Concept Note on Reducing the Burden of Chronic Kidney Disease (CKD)."
These two efforts highlight the value of including patient voices to achieve better health outcomes.
Understanding the AAKH Initiative
In 2019, the American President signed an Executive Order for the Advancing American Kidney Health (AAKH) Initiative. This effort aims to improve kidney care in the United States by setting three main goals:
- Reduce the number of Americans who develop end-stage kidney disease (ESKD) by 25% by 2030.
- Increase the number of new patients on home dialysis or receiving transplants to 80% by 2025.
- Double the number of organs available for transplant by 2030.
Richard Knight, a kidney transplant recipient and advocate, highlights how the AAKH Initiative brings hope to patients. However, he stresses that hope alone isn't enough—effective planning and action are needed. He believes patient engagement is key to successfully implementing the initiative's strategies.
Comparing Goals: AAKH and the WHA Concept Note
The "Concept Note on Reducing the Burden of Chronic Kidney Disease" focuses on global kidney health. Proposed for the 2025 World Health Assembly (WHA78), this resolution addresses kidney disease worldwide, particularly in low- and middle-income countries (LMICs). Its goals include:
- Raising global awareness about kidney disease.
- Preventing CKD and catching it early.
- Ensuring affordable treatment options, including dialysis and transplants.
- Strengthening health systems to provide quality care for CKD patients.
- Addressing the social and environmental causes of kidney disease.
Both efforts share common themes, such as improving education, prevention, and access to care. While AAKH focuses on national policies in the United States, the WHA Concept Note looks at global challenges, particularly in underserved regions.
Education and Awareness: A Shared Focus
Both initiatives highlight the importance of education. Knight stresses that early diagnosis and patient education can save lives. He notes that many patients are unaware of their options until they "crash" into dialysis from the emergency room. The AAKH Initiative promotes programmes like the AAKP Ambassador programme, where experienced patients help educate others.
Similarly, the WHA Concept Note aims to increase awareness of CKD risk factors like diabetes and high blood pressure. It calls for public campaigns and professional training to ensure early detection. Both efforts recognize that informed patients and healthcare providers are crucial to better outcomes.
Preventing and Detecting CKD Early
Stopping kidney disease before it progresses is a shared goal of the AAKH Initiative and the WHA resolution. The AAKH plan encourages primary care doctors to diagnose kidney disease earlier and manage risk factors. Knight believes this is achievable if healthcare systems focus on prevention and provide the right incentives.
The WHA Concept Note also emphasizes integrating CKD screening into primary care, especially for high-risk groups. This is particularly important in LMICs, where healthcare resources are limited. By catching CKD early, both initiatives aim to reduce the number of people needing dialysis or transplants.
Expanding Treatment Options
Both efforts seek to give patients more treatment choices. The AAKH Initiative aims to increase the number of patients on home dialysis or receiving transplants. Knight highlights the importance of educating patients about their options, noting that fear of the unknown often prevents people from choosing home dialysis. Patients can make decisions that improve their quality of life with proper information.
The WHA resolution also focuses on equitable access to dialysis and transplants. It calls for investments in healthcare infrastructure and financial support for patients in LMICs. By addressing barriers to care, the WHA hopes to ensure that all patients, regardless of location or income, have access to life-saving treatments.
Increasing Organ Availability
One of the most challenging goals in both initiatives is increasing the number of organ transplants available. The AAKH Initiative aims to double the number of kidneys available in the U.S. by 2030. Knight suggests that adopting best practices from other countries, like using kidneys from older donors, could help achieve this goal.
The WHA resolution also recognizes the importance of organ transplants but focuses on building global systems to support organ sharing and research. By encouraging international collaboration, the WHA aims to make transplants more accessible to patients worldwide.
Building Stronger Health Systems
Both initiatives emphasise the need for strong healthcare systems to deliver quality kidney care. The AAKH Initiative focuses on changing incentives in the U.S. healthcare system to prioritise patient-centered outcomes. Knight believes that physician leadership and innovation are essential to achieving this transformation.
The WHA resolution calls for investments in healthcare systems, especially in LMICs. It highlights the importance of training healthcare workers, building infrastructure, and creating referral networks to ensure continuity of care. By strengthening health systems, the WHA aims to improve care for CKD patients at every stage of their journey.
The Power of Patient Engagement
Patient engagement is the common thread that unites these efforts. Knight's advocacy work shows how patients can drive change by sharing their experiences and insights. Programmes like the AAKP Ambassador initiative demonstrate the value of peer-to-peer education in empowering patients and improving outcomes.
The WHA resolution also emphasises the role of patients in shaping kidney health policies. By including patient perspectives in decision-making, healthcare systems can create more effective and responsive programmes. Both initiatives recognise that patients are not just recipients of care but active partners in their health journeys.
Conclusion: Working Together for Better Kidney Health
The Advancing American Kidney Health Initiative and the WHA Concept Note on CKD share a vision of improving kidney care through education, prevention, and access to treatment. While the AAKH Initiative focuses on national strategies in the United States, the WHA resolution addresses global challenges, particularly in underserved regions.
By prioritizing patient engagement and aligning healthcare policies with patient needs, these efforts have the potential to transform kidney care. As Richard Knight's story shows, empowering patients is not just the right thing to do—it is the key to creating lasting change.
Please note that the views expressed in this article are those of the author and do not necessarily reflect the opinions or positions of Vital Signs.
- Knight, “A Patient’s Perspective on Advancing American Kidney Health Initiative.”
- Ulasi, “Concept Note on Proposed Resolution for WHA78 (May 2025) on ‘Reducing the Burden of Non-Communicable Disease through Promotion of Kidney Health and Strengthening Prevention and Control of Kidney Disease.’”
