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How to engage hard-to-reach kidney disease patients

5-minute read

Chronic kidney disease continues to impact millions of Americans — some more frequently and direly than others. Now is the time for payers to partner more closely with providers and better target those members most at risk.

In a sense, every patient with chronic kidney disease (CKD) or end-stage renal disease (ESRD) falls under the category of hard-to-reach. Research shows that as many as 9 out of 10 of those with CKD are unaware that they have it.1 The reasons for this profound disconnect are numerous and complex and include everything from a lack of standardized routine testing among providers to limited public knowledge of the disease and its comorbidities.

But the main reason why kidney disease so often goes unnoticed may simply be that it presents few overt symptoms. As Elizabeth Montgomery, National Vice President of Learning Strategies and Population Health Programs at the National Kidney Foundation, aptly puts it, “Kidneys don’t cough.” And the symptoms that these conditions do produce — fatigue, shortness of breath, edema, poor appetite — are often attributed to other ailments

Within this dire lack of awareness lies an even more troubling paradox: The populations most at risk of developing CKD are also the least aware of the condition’s warning signs. That’s typically the case because they receive the least early intervention. For example, though Black Americans are 3.4 times more likely than their white counterparts to develop ESRD in their lifetime,2 they’re less likely to have received kidney-related health care before receiving a diagnosis.3

Engaging those most in need of care requires payers to adopt a comprehensive and multifaceted approach — one that activates community hubs, assists providers, harnesses available health data and makes strategic use of in-house messaging. Kidneys may not cough, but that doesn’t mean their decline can’t be caught and treated far sooner.

Empowering providers

The first line of defense against the further proliferation of CKD is the primary care physician (PCP), the doctors performing routine screenings and physicals for patients across the country. These are the providers patients know and trust, and they're are often the first people they call when they experience a worrisome symptom. As such, PCPs are in a unique position — almost certainly the best position — to stem the tide against rampant CKD and ESRD.

However, the current state of routinized testing for kidney function (conducted via a simple blood draw or urine sample) is insufficient. One study found that only a small fraction of at-risk patients receives screenings for reduced kidney function. Among the more than 28 million patients included, more than 80% had not been tested for reduced kidney function despite medical guidelines indicating testing for this population.4

The upshot? Providers are in urgent need of guidance on the necessity of these simple, routine tests, which must also be covered as a matter of course by health plans. Testing is of particular importance in members already diagnosed with conditions comorbid to CKD, such as diabetes and high blood pressure.5 Payers should consider offering seminars on the quiet epidemic of CKD and ESRD, whether in-person or virtual, and the simple but overlooked key to turning it around — preventive screening.

Crucially, payers must also craft comprehensive messaging for providers on commonly missed markers of renal disease, as well as the social determinants of health that often play a role in this condition and how to mitigate them. Montgomery says, “If you look at the literature, you will see that those individuals that are experiencing poverty and food insecurity and have low levels of academic achievement all have significantly greater likelihood for the development of kidney disease or its rapid progression.”

Providers should also be offered information on the latest research on early transplants — those that occur without the patient ever receiving dialysis or receiving it only for a short time — as well as the rise of home dialysis, both of which have been shown to improve patient outcomes.6,7

Leveraging data

Payers are awash in electronic health record data. Close analysis of this invaluable information can help surface provider-level trends as well as individual insights, such as clusters of kidney-related symptoms that should trigger providers to explore the potential for kidney disease. For instance, if a member already diagnosed with diabetes (a highly common comorbidity of CKD8) submits a claim for a dermatologist visit regarding their highly itchy skin (a lesser-known symptom of renal disease9), an algorithm-based trigger can automatically alert administrators to kickstart a timely intervention with the member and get them the CKD screening they need.

Indeed, the ability to do so already exists. In 2021, researchers at Columbia University’s Vagelos College of Physicians and Surgeons created an algorithm capable of “automatically scanning electronic medical records for test results, performing the calculations that indicate kidney function and damage, staging the patient’s disease, and alerting physicians to the trouble.”10 The program was so effective that it correctly diagnosed 95% of the CKD patients already diagnosed by nephrologists and correctly ruled out CKD in 97% of those subjects whom the physicians had determined did not have the disease. The algorithm, the report states, is “freely available for use by other institutions.”

Partnering with communities

For many populations, local connections and human relationships can be a powerful driver of engagement — a lever that, when pulled, garners significant attention and follow through. For example, a group of researchers eager to better understand genetic variants that put Black Americans at higher risk of kidney disease, such as APOL1, partnered with pastors in North Carolina last year, aiming to reach 5,000 Black members of the community and convince them to undergo testing for CKD.11

Payers can also tap into these strong interpersonal networks and community hubs, aligning with local leaders to disseminate information about the need for preventive screenings as well as potential CKD symptoms to watch for. Churches, social clubs, local libraries and community centers are all ripe for outreach, and there are plenty of available resources on which payers can model their messaging. The National Institute of Diabetes and Digestive and Kidney Diseases provides toolkits for everything from discussing kidney health at family reunions to integrating health information into faith-based organizations.12

The goal, says Montgomery, is to make CKD something that people both know about and talk about — a household name, in effect. “Thirty years ago, most of us did not talk about breast cancer in mixed company,” she says. “At that time, breast cancer was usually fatal. There was very little prevention. There was very little investment in prevention. And even using the word breast in a public setting was not something that would be deemed acceptable. But here we are in a world where every woman of a certain age, the first thing that gets asked of her when she goes into any clinical office is, When was your last mammogram?”

That’s the kind of awareness of CKD that the public needs.”

Diversify the means of outreach

It’s important for payers to offer information and resources across a variety of platforms — such as via email, social media, direct mailers, and by SMS text message. This helps to ensure that no patient is left behind simply because they’re not typically online or don’t have a reliable mailing address. Pursuing every one of these avenues of communication improves the odds of reaching those most likely to be affected by CKD.

But the means of communication isn’t the only factor to bear in mind. Payers must also consider members’ cultural background and language when crafting informational materials and offering interactive resources. Providing concierge-like on-call services in English means little to a patient with limited English proficiency, for example. The key is to make it easy for systemically underserved groups to sustain engagement and follow-through on care. That may mean providing bilingual member services representatives, printing direct mailers in multiple languages, spotlighting transplant stories from patients within the same demographic, or promoting financial resources and reassurance alongside calls to drive engagement.

The sheer volume of CKD and ESRD patients in America is staggering. And the cost of this unchecked epidemic — both emotional and economic — is hard to overstate. With a concerted and comprehensive effort between payers, providers and community leaders, the health care sector has a chance to dramatically influence this public health crisis and significantly improve health outcomes for thousands of patients.

Learn about Optum Kidney Solutions for health plans.


  1. National Institute of Diabetes and Digestive and Kidney Diseases. Kidney disease statistics for the United States. Accessed August 30, 2023.
  2. Walker CS, Gadegbeku CA. Addressing kidney health disparities with new national policy: the time is now. Cardiovasc Diagn Ther. 2023 Feb 28;13(1):115-121.
  3. Arya S, Melanson T, George E, et al. Racial and sex disparities in catheter use and dialysis access in the United States Medicare population. JASN. 2020; 31(3):625–636.
  4. Alfego D, Ennis J, Gillespie B, et al. Chronic kidney disease testing among at-risk adults in the U.S. remains low: real-world evidence from a national laboratory database. Diabetes Care, 2021; 44(9):2025–2032.
  5. NephU. Kidney disease & comorbid conditions. Accessed August 30, 2023.
  6. Patient-Centered Outcomes Research Institute. Removing roadblocks to kidney transplant through health system change. Accessed August 30, 2023.
  7. National Kidney Foundation. Home hemodialysis. Accessed August 30, 2023.
  8. Centers for Disease Control and Prevention. Diabetes and chronic kidney disease. Accessed August 30, 2023.
  9. American Academy of Dermatology Association. Kidney disease: 11 ways it can affect your skin. Accessed August 30, 2023.
  10. Columbia University Irving Medical Center. Algorithm scours electronic health records to reveal hidden kidney disease. Accessed August 30, 2023.
  11. Kolata, Gina. Targeting the uneven burden of kidney disease on Black Americans. The New York Times. May 17, 2022. Accessed August 30, 2023.
  12. National Institute of Diabetes and Digestive and Kidney Diseases. Community health & outreach. Accessed August 30, 2023.