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A photo of PCORI Executive Director Nakela L. Cook, MD, MPH, for the Leadership Perspective

Coordination of care—defined by our colleagues at the Agency for Healthcare Research and Quality (AHRQ) as “organizing patient care activities and sharing information among all of the participants concerned with a patient’s care to achieve safer and more effective care”—is a critical issue facing our country’s complex and often fragmented health and healthcare system.

Care coordination, especially transitional care, has long been on PCORI’s radar, including in the funding of research studies on maternal care and cardiovascular disease, as well as on the transition from pediatric to adult care for individuals living with sickle cell disease. This issue aligns clearly with PCORI’s mission, touches all our National Priorities for Health, and offers opportunities for fruitful collaboration with other organizations and agencies as the health research community seeks evidence supporting innovative ways to enhance quality and coordination of care for patients, families and caregivers.

The challenges that can result from poor care coordination and transitions are well documented: poor health outcomes, delayed care, unnecessary hospitalizations, and stress on caregivers and family members. The financial impact can also be significant. A recent special issue of the Medical Care journal on transitional care research, to which PCORI contributed, cited an AHRQ study that found Medicare spending $26 billion annually on hospital readmissions, of which $17 billion was determined to be avoidable.

[Care coordination] aligns clearly with PCORI's mission, touches all our National Priorities for Health, and offers opportunities for fruitful collaboration with other organizations and agencies ... to enhance quality and coordination of care for patients, families and caregivers.

The impact of care coordination on patients and families was brought home in compelling fashion at our 2022 Annual Meeting by keynote speaker Ashley Valentine, founder of Sick Cells, who described her family’s heart-wrenching experience managing six different conditions for her brother Marqus. Marqus’ care required their mother, a registered nurse, to essentially “lead her own grand rounds,” talking to physicians and others in orthopedics, hematology and anesthesiology, as well as taking occasional “insurance days” off work to educate insurance providers and advocate for coverage. Ms. Valentine also estimated that in one month alone, in addition to more than $1,000 in out-of-pocket costs, her parents lost nearly 200 hours of work and coordinated more than 20 doctor’s appointments and 20 pharmacy visits.

These kinds of factors, or what PCORI describes as patient-centered economic outcomes, are part of the broader universe of patient-centered outcomes on which PCORI is working to ensure appropriate and relevant data collection in the comparative clinical effectiveness research (CER) we fund. In terms of care coordination specifically, PCORI is also advancing the use of more patient-centered outcomes in research, based on direct input from patients and stakeholders, in a field that has historically relied heavily on hospital admissions or other measures of healthcare utilization. As noted in the Medical Care issue, these patient-centered outcomes might include functional status, days spent at home and patient experience. Much of what has been learned through PCORI-funded research in this area, especially on transitional care, was through the Transitional Care Evidence to Action Network, which supported and connected research teams that were studying transitional care, to foster collaboration and learning.

Several current PCORI-funded CER studies in the pipeline have the potential to provide evidence that can improve coordination of care in critical areas, especially among historically underserved populations, including:

  • A study comparing three ways to reduce unplanned return visits to the hospital, among African American, Hispanic and Latino older adults, who are more likely to return to the hospital after a stay for treatment of chronic conditions than are other older adults.
  • A study comparing two approaches to care coordination for patients with multiple health needs, which is looking at clinical and claims data, as well as patient-reported information on social needs, healthcare costs and satisfaction with health care in patients at primary care clinics, with the aim of enhancing quality and coordination of care for patients with complex health needs.
  • The D-CARE study, which is comparing health system–based care and community-based care for dementia patients and their caregivers. This study, which compares three ways to reduce behavior problems in patients with dementia and lower stress among family members or friends who care for them, is jointly funded by PCORI and the National Institute on Aging (NIA); the NIA will analyze healthcare utilization data from the study.

These kinds of studies, focusing on patient-centered outcomes developed with input from patients and their caregivers, can provide important evidence to inform practice and policy decisions that may reduce the adverse impact on patient health outcomes that result from navigating a fragmented healthcare system. This is especially important for the management of multiple chronic conditions—likely to be an ever-more-important issue as the proportion of people in the country over 65 continues to grow.

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