Greater New York Ending Disparities and Inequities in CKD Leadership Summit

Approximately 2,220,000 adults in Greater New York are affected by CKD; and approximately 266,000 adults are aware of it. As part of a national NKF Collective Impact strategy, Greater New York stakeholders implemented a roadmap to drive a cultural shift in primary care - toward increasing the early diagnosis and management of CKD, especially in communities disproportionately burdened by CKD.

Using a multi-phase stakeholder engagement process, NKF created the conditions for Collective Impact - influential champions, adequate financial resources, and a sense of urgency for change¹- to drive change in Greater New York.

Through a series of facilitated discussions, health care and public health leaders identified barriers and solutions to improve CKD awareness, detection, and management in Greater New York, and especially tools and strategies that can be implemented within stakeholders’ own institutions. Learning and action workgroups supported increased awareness and action amongst the participants. The four workgroups convened to cover the following topics:

Clinical Considerations for CKD in Primary Care

• Goal: To discuss strategies and approaches that can be employed to improve CKD recognition and care in primary care settings.
• Background: A large, national study illustrated that less than 12% of people with CKD were diagnosed in primary care.² This included as many as 40% of people whose kidneys required specialty care. With the advent of new therapies demonstrated to slow or stop the progression of CKD, there is a very real opportunity to improve quality of care for people with CKD across the entire spectrum of disease.

Engaging Community and Community-Based Solutions

• Goal: To develop strategies to advance CKD awareness through community engagement and to ensure that health care providers are aware of the community resources available to delay CKD progression.
• Background: In the US today, only 10% of people with laboratory evidence of CKD know that they have kidney disease.³ Improved patient awareness, engagement, and Self-Management are vital to successfully slowing CKD progression. As diabetes and hypertension play significant roles in the development of CKD, working with community organizations that support people with chronic disease can be an important step toward raising public awareness of CKD among those at risk for CKD.

Wellness and Prevention (CKD Population Health)

• Goal: To develop a strategy to incorporate CKD testing and diagnosis into wellness and prevention practices within the employer/commercial health plans, and the broader community.
• Background: To date, almost 90% of people living with CKD remain undiagnosed in the population and the majority will not receive guideline recommended annual testing.⁵ This breakout session will discuss the strategies that can be developed and employed to ensure that CKD testing and diagnosis are included as part of the wellness and prevention services, including corporate programs, diabetes prevention activities, etc., that are available in the Greater New York area.

Policy, Payment, and Quality Measurement

• Goal: To develop a strategy to streamline CKD testing in primary care from a policy and payment perspective.
• Background: In July 2020, the NCQA released the Kidney Health Evaluation for Adults with Diabetes HEDIS measure (KHE).⁴ This measure assesses the percentage of people with diabetes that receive both tests for CKD during the course of a year. When tested against over 70 claims datasets, this measure was achieved in only 35% of cases. This measure began collecting data for public reporting in October 2021.

After 25 hours of facilitated discussion, 71 stakeholders identified 14 strategies to improve testing, diagnosis, and early management of CKD in Greater New York.  Read the Executive Summary Here.

On October 19, 2023, NKF of Greater New York hosted a virtual summit to present the final recommendations and engage partners in joining the Collective Impact Approach. Over 270 registered and 165 attended the live Summit with 177 commitments from 58 individuals to support implementation of the 14 recommendations.

During the learning and action workgroups, stakeholders identified several barriers to CKD testing, diagnosis, and management.

Knowledge and Awareness: There is a general lack of CKD knowledge and awareness across multiple stakeholders. Among the public and patients, the risk factors for CKD are not well known. Therefore, patients are not knowledgeable when to get tested, and even if patients are tested, they are not equipped with the chronic disease self-management tools needed to handle their diagnosis. Patients need better access to information or tools to help manage medications, navigate referrals to specialists, access to mental health support, and make diet or lifestyle changes to manage CKD. Challenges with health literacy and navigating a complex health system compound this issue.

Among clinicians there are awareness gaps around the guidelines for screening, the impact of CKD on health outcomes, especially cardiovascular outcomes, and the costs of CKD. Limited appreciation of the role of social determinants of health in CKD also hampers appropriate intervention. Disparities in CKD will not be addressed without recognition and action to address these root causes.  

Health Care Systems and Structures: Competing priorities and limited clinician time in primary care are significant barriers. Multiple quality measures and chronic condition care guidelines can be overwhelming. Additionally, EMR tools and technology are not optimized for CKD, making it easy for clinicians to lose sight of CKD testing and management.  Participating group members agreed that providing the best care to patients is done most effectively with an interdisciplinary team. However, primary care teams lack the structure or bandwidth to successfully implement new initiatives.

Incentives and Quality Measures: Early detection and treatment of CKD needs more attention, with emphasis on economic savings, cost-benefit studies and incentives for providers and patients. Outcome measures are not clear or agreed upon and value-based incentives for CKD screening are not prioritized. 

To address these barriers, stakeholders identified fourteen recommendations, across five themes to serve as a roadmap for Greater New York to improve testing, diagnosis, and management of CKD.

Please see Executive Summary for more details regarding recommendations.

Please check back for updates on our progress implementing these recommendations.

Saskia Thomson, Executive Director, National Kidney Foundation Serving Greater New York: saskia.thomson@kidney.org  

1. Hanley Brown, F. Kania, J. and Kramer, M. Channeling Change: Making Collective Impact Work. Stanford Social Innovation Review. 2012. https://doi.org/10.48558/2T4M-ZR69  
2. Szczech, Lynda A., et al. “Primary Care Detection of Chronic Kidney Disease in Adults with Type-2 Diabetes: The ADD-CKD Study (Awareness, Detection and Drug Therapy in Type 2 Diabetes and Chronic Kidney Disease).” Public Library of Science, 26 Nov. 2014. https://doi.org/10.1371/journal.pone.0110535
3. “Chronic Kidney Disease (CKD) Surveillance System: Awareness.” Centers for Disease Control and Prevention. https://nccd.cdc.gov/ckd/detail.aspx?QNum=Q97#refreshPosition
4. Brock, Matt. “Kidney Health: A New HEDIS Measure.” NCQA Blog, 16 Jul. 2020. https://blog.ncqa.org/kidneyhealth/
5. “Chronic Kidney Disease in the United States, 2021.” Centers for Disease Control and Prevention, 4 Mar. 2021. https://www.cdc.gov/kidneydisease/pdf/Chronic-Kidney-Disease-in-the-US-2021-h.pdf