Following an aspirational policy-oriented kick-off at Kidney Week, I found that the second day of Kidney Week focused on the most important aspect of what we do: our patients.  From the public-private partnerships including KidneyX and Kidney Health Initiative (KHI), to the CMS proposed payment changes, to the global challenges facing nephrology, the common sentiment has been simple: we must not forget our efforts to keep the patient at the center and include patient participation and insight. 

The patient needs spurring innovation via KidneyX

Ed Simcox, Chief Technology Officer at the U.S. Department of Health and Human Services (HHS) and Sandeep Patel, PhD at the Office of the Secretary at HHS spoke to ASN about KidneyX , a public-private partnership aimed to accelerate innovation in the prevention, diagnosis, and treatment of kidney disease.  To incentivize this, a $2.6 million prize is being awarded – but at the heart is ensuring that patients have continual access to medical product innovation.  Dr. Patel laments that we are currently suffering from “good enough syndrome,” in which the renal space is not on anyone’s radar and as a result stifled innovation has led to prevention of public and private support from investment in the area and consequently the patient’s voice is left unheard.  To combat this, KidneyX is making patient input a requirement in the innovation concepts – which, in a bureaucratic system, has too often been forgotten.

The patient voice in the Kidney Health Initiative and the Song Initiative

“We believe that dialysis keeps you alive, but dialysis does not allow you to live,” stated KHI Board co-chair, Dr. Prabir Roy-Chaudhury, MD, PhD, FASN in recalling what a patient had told him about life with ESRD.  If that sentiment is not enough reason to launch a roadmap for transforming renal replacement therapy, Dr. Roy-Chaudhury also highlighted that there is poor value in ESRD care.  There is a 5-year survival on HD of 41%, “a dismal outcome at a huge cost - $34 billion dollars , (emphasis mine)” and one of the principal drivers being that dialysis has not changed in the past several decades.  As policy-minded physicians, we must ask – how did we get to this point in care where we are suffering from “good enough syndrome,” when what we have is poor patient quality of life with a life expectancy that is worse than most cancers?

The Celeste Castillo Lee Memorial Lecture was given by David M. White who is on the AAKP Board of Directors, KHI Board of Directors, and is the KHI Patient and Family Partnership Council Chair. He discussed that prior to the establishment and commitment of KHI, he had asked himself “Why did I settle for that ‘dialysis hangover’… it never occurred to me to ask if I could improve how I was treated, I just wanted to know if I was doing the right thing.”  Mr. White presented the patient’s perspective on innovative alternatives to renal replacement therapy, namely wearable treatment devices.  Patient input could not be more important when it comes to designing and developing these treatment options, as manifested by perhaps somewhat surprising survey results.  In ranking of potential benefits of wearable devices, patients ranked “Not needing dialysis in clinic” as the top benefit, followed by simply feeling better.  Nearly no-one ranked fluid and diet as their most important benefits – which is typically perceived as a particularly valuable quality of life measure.  Additionally, one of the most important concerns patients have of a wearable device is interfering with activities or being noticed by others.  And most interestingly is that the only group of patients that would choose to have a wearable device over their current treatment option is in-center hemodialysis.  To say that patient input is paramount in our efforts to provide care and policy decision-making is an understatement.

Dr. Allison Tong, PhD, associate professor of public health at the University of Sydney, highlighted the discordance from patients/caregivers with healthcare providers via the Standardizing Outcomes in Nephrology (SONG) Initiative . Dr. Tong noted that patients and caregivers frequently rank outcomes that are important to them differently from how providers rank them.  These outcomes are wide-ranging: from fatigue and to the ability to travel (both more important to patients than providers), to death and mortality (more important to providers than patients).  These disparities are a driving force behind the SONG initiative which seeks to establish core outcomes for studies that will be more relevant to clinical decision making and address actual patient concerns rather than contribute to “research waste,” that leads to inefficient care that is not always relevant to patient concerns.

The patient challenges in Global Nephrology

One of the most important discussions in regards to policy is keeping up with the pace of the challenges in nephrology on a global level.  Dr. Vivekanan Jha highlighted Data from the Global Burden of Disease Study that showed that kidney disease is becoming a leading cause of death and death due to kidney disease has had the largest percentage increase of all causes.  Additionally, the costs of CKD and its complications are becoming increasingly unsustainable for most developed countries, and are essentially impossible in low and middle income countries.   He pointed out that the number of nephrologists in low income countries is exceedingly low compared to high income countries – in fact, there are only 8 nephrologists in the country of Ghana, and ASN was very fortunate to have one of them, Dr. Dwomoa Adu, speak to us about research in a setting without an abundance of resources.  Utilization of mobile applications is employed as preventative strategies in these countries, as developed and backed by organizations such as the WHO in efforts to have patients have control over their care, especially where providers are scarce.

There’s a lot of work to be done in nephrology and healthcare delivery, and we have to remember that our patients need to be front in center as we move forward.