Breaking Down Health Care Silos
A patient we’ll call Bonnie has been on dialysis for five years, making the difficult trip three times a week to a clinic to sit for hours hooked up to a machine that filters toxins from her blood. Bonnie is 65 and suffers from end-stage renal disease (ESRD), the gradual failure of her kidneys. She has chronically low blood pressure, which complicates the dialysis, and ingests a lot of salt which causes weight gain between treatments. Often, she wakes up breathless and ends up in the emergency department. The ED and dialysis unit don’t have a shared electronic health record, and on discharge there is little communication between the two sites about her care. Nor is there communication between the dialysis unit and her primary care doctor (PCP). When she’s hospitalized, her medications are sometimes changed, but that critical information often doesn’t get back to her many providers. Bonnie is hoping for a kidney transplant, but she doesn’t know where to start, and she has yet to undergo an evaluation to see if she’s eligible.
This type of siloed, uncoordinated ESRD care has serious consequences for Bonnie and thousands of patients like her. On a national level, ESRD takes a huge toll on patients, families and caregivers, and society. Transplants are exceedingly scarce, and so for the vast majority of the 750,000 people affected by ESRD in the US each year, dialysis is the only viable treatment. For patients on dialysis, hospitalization rates and risk of developing related medical problems, and of dying, are high. Finally, while ESRD patients make up less than 1% of the Medicare population, they account for more than 7% of the Medicare budget – a staggering $50 billion annually.
Fragmented care is an important part of the reason for the high costs and utilization and often poor outcomes associated with ESRD. Patients receive care through a patchwork of providers at various sites — outpatient dialysis units, primary care practices, specialty clinics, hospitals and others – which often don’t communicate. Gaps in care are inevitable, and opportunities to intervene before problems arise are often missed.
That’s why in 2016 we launched a coordinated ESRD program within Partners Healthcare, based at Brigham and Women’s Hospital (BWH) in Boston, one of the first to bring the care-coordination principles that are increasingly common in primary care to disease-specific specialty care. While other programs, like the CMS ESRD demonstration projects, have piloted care-coordination models with large dialysis organizations, ours is the only such program that we’re aware of that coordinates care across all stakeholders (dialysis units, hospitals, primary care providers, and others) rather than focusing on care within the dialysis unit itself. Further, unlike other programs, ours extends beyond dialysis-based care to facilitate transplant evaluations and, when needed, palliative care.