Chronic Kidney Disease Initiative

Enabling Major Systemic Change Over More Than A Decade

The Council of American Kidney Societies (CAKS), composed of the president and president-elect of six major renal organizations, determined a need to coordinate and more rapidly advance numerous programs pertinent to chronic kidney disease (CKD). An initiative was formed (the CKDI), with a nine-member Steering Committee. A workshop for CKDI “stakeholders” using Structured Democratic Dialogue was held in February 2003 to clarify the issues to improve outcomes for patients and create an action plan. The Committee published the results of the workshop and their recommendations in March 2004. Since then the leadership for implementation evolved; however, these recommendations were constantly in the background demanding attention for improving CKD care.

The Situation

The nephrology community is relatively small, and the problem is large. In 2004, it was estimated that there were 11 to 30 million people in the United States with some stage of CKD or other evidence of kidney disease. CAKS understood that a coordinated effort to deal with this enormous problem did not exist. CAKS initiated a CKD response, which evolved into the CKD Initiative, to accomplish this integration and to further formalize an action plan. The idea was to bring together disparate yet interested parties to share ideas and attempt to develop common solutions. This magnitude of input, in a formalized manner, with this breadth of participation, was unique in nephrology.

The Approach

As the CKDI formed it was well publicized in the medical community and pharmaceutical, service, nursing, and other supporting organizations saw the potential benefits. They then provided funding that allowed 48 stakeholders and 10 observers to participate in a workshop utilizing Structured Democratic Dialogue (SDD). The participants fully identified the hurdles that had to be overcome to improve care at scale, and defined the key actions that needed to be taken to overcome these barriers. Not only did they identify what needed to be done and why, but the process effectively created a powerful coalition of influential leaders who agreed on the path forward.

The power of this aligned coalition was important as some of the medical organizations dedicated to improving kidney care dissolved and were replaced with others. The people who led the CKDI originally were to lead groups focused on each of the key actions; however, with shifting leadership and support, the CKDI itself was shut down. However, their white paper describing the problem, the process, the results and recommendations lived on. As the medical community evolved, this white paper and the aligned understanding of the members coalition kept hovering in the background demanding attention. Eventually, because the CKDI had created sufficient alignment about the key issues, various organizations decided to see what could be accomplished.

The Results

Today there is again leadership on the issue – the Federal Government put out bids for the past four years to determine how best to address end-stage renal disease (ESRD) and lower the cost. Companies have taken it up at twelve sites across the country. They quickly realized that without earlier intervention, meaning attending to CKD, they couldn’t lower costs and obtain better outcomes for patients on dialysis or with a kidney transplant. The condition of the patient had to be much improved to change ESRD outcomes. With this leadership, there continues to be an enormous amount of progress mainly through demonstration projects that are on-going right now.

At the start in 2003, there was no uniform definition of CKD. There is now no question on the definition. There are now five stages of CKD based on a person’s Glomerular Filtration Rate (GFR) measurement – a measure that is roughly equivalent to the percent of kidney functioning. All the major national labs were convinced of the need for and importance of reporting GFR. Today, all the major labs now report estimated GFR (EGFR) whenever blood work is done. When EGFR result reporting became common, education about the meaning of the scores wasn’t in place. For example, age knocks down a person’s EGFR score. Medical providers needed lots of education about the EGFR score and when it really means kidney failure for different ages, races, sex. This education was provided, and the medical community is now settling into what EGFR means. Dr. Tom Parker III, the chair of the CKDI steering committee, says that this reporting came directly out of the initiative. He doesn’t believe EGFR would have happened without the CKDI.

There are now best therapy guidelines defining what to do with declining kidney function created by the community of care. For example, if someone is 60 years old with an EGFR of 30, the guidelines tell the providers exactly what to do with diet, blood pressure, medications to maintain renal function, when to educate patients on kidney failure and their options for transplantation, renal dialysis, peritoneal dialysis, conservative management. All these guidelines are out there now in the public domain.

Insurance companies were slow to get on-board unless care was provided by an integrated care organization like the Cleveland Clinic where they put in place very rigid protocols for how to manage CKD. A typical payer like United or Aetna have so few patients with renal failure as compared to cancer that they haven’t paid attention to CKD. Because of the slowness to support other providers, the renal care community responded with a significant consolidation of renal providers. There are very few solo practices today. In 2003, solo nephrologists went to a hospital every day, then their transplant clinic, then outpatient clinic, then to their dialysis clinic. Now most of the major consolidated organizations have CKD clinics overseen by nephrologists, significantly managed by physician extenders (nurse clinicians, nurse practitioners, or physician assistants), another outcome from the CKDI. These clinics are how the medical community scaled to meet the needs of 11 to 30 million patients with a limited number of nephrologists.

Explaining the process is not easy. Lots of people try to reproduce what you are doing by having sticky stuff all over the walls and having taped sheets of paper all over the building trying to gain consensus. Yours is the most effective process I ever saw. With CKDI, we had all these people with disparate personalities and disparate interests. People who had terribly different agendas. And yet they quickly arrived at a consensus. When I see some of the other guys on the steering committee, we mention just how effective that process was.

Looking back, it’s all being implemented. I don’t know of one thing we recommended that the renal community is resisting right now. In some form or fashion, they are implementing everything that was recommended. Even the pharmaceutical houses, and patient groups, and nursing groups, they are all embracing the recommendations. I’m really pleased with how it turned out.

Dr. Thomas Parker III
Chair, Steering Committee, Chronic Kidney Disease Initiative
CKDI Influence Map

The major categories for advancing the CKD initiative

References and acknowledgements

This case study uses content from:

‘Collaborative Leadership for Improving Chronic Kidney Disease (CKD) Patient Outcomes: Phase I Report of the CKD Initiative Consensus Project’, Peter Schwartz, Shari Rudavsky, Chris Feudtner (CWA Ltd), 2003.

Parker, Thomas F., et al. “The chronic kidney disease initiative.” Journal of the American Society of Nephrology 15.3 (2004): 708-716.

“Chronic Kidney Disease Initiative Results – More than a Decade Later.” Telephone interview. 13 June 2017.

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