Patient-reported outcomes (PROs), defined as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else,” are the future of healthcare.
In addition to helping people like 80-year-old-Ruth continue to live interpedently, PROs—interchangeable with the term patient-generated health data (PGHD)—have several benefits:
1. Effectively supplement existing clinical data, filling in gaps in information and providing a more comprehensive picture of ongoing patient health.
2. Provide important information about how patients are doing between medical visits.
3. Gather information on an ongoing basis—rather than just one point in time—and provide information relevant to preventive and chronic care management.
The new technologies that enable PROs and PGHD (e.g., sensors that detect whether Ruth takes food out of her refrigerator on a regular basis), generate important data outside of patients’ traditional care environments, sharing it with care teams to expand the depth, breadth, and continuity of information available to improve healthcare and outcomes.
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When Ruth retired from a successful marketing career at seventy, she set a personal goal to live independently for as long as possible. For the first decade of retirement, she was well enough to remain in her lifelong home, but as she turned eighty, she realized she needed more support to stay independent. Ruth purchased a unit on the twelfth floor of a high-rise retirement community in a major U.S. city, where her two daughters and grandchildren lived. The building is outfitted with technology designed to allow residents to age in place and live independently for as long as possible.
The sensors in Ruth’s home generate patient-reported outcomes (PROs)—also referred to as patient-generated health data (PGHD). The technology transmits PROs to secure servers at the local academic medical center where Ruth receives care. Machine learning algorithms process the data to understand her living habits and movements to detect low activity, fatigue, deteriorating appetite, medication noncompliance, and other changes that can indicate a deteriorating condition. If the system finds signs of clinical deterioration, it automatically alerts Ruth’s care manager.
The National Quality Forum defines PROs as “any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else.” PROs tools enable the assessment of patient-reported health data for physical, mental, and social well-being.
The Office of the National Coordinator for Health Information Technology (ONC), which uses the term PGHD, defines data the patient generates as “health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a health concern.” PGHD includes, but is not limited to, health history, treatment history, biometric data, symptoms, and lifestyle choices. The ONC distinguishes PGHD from healthcare data generated in clinical settings and through encounters with clinicians in two key ways:
Ruth’s building is wired with sensors on the ceilings, walls, in key appliances, and in every room of the apartment:
The emergence of smart phones, mobile apps, ubiquitous high-speed Internet, and remote monitoring devices (e.g., sensors), coupled with health systems’ implementation of EHRs, patient portals, and secure messaging, offer innovative ways to connect patients and clinicians, and to strengthen patients’ engagement in their health and healthcare. These technologies enable patients to generate important data outside of traditional care environments (PROs) and share it with their care team. PROs expands the depth, breadth, and continuity of information available to improve healthcare and outcomes. Ruth welcomes her sensor-laden environment because it allows her to live independently in her own home.
With PROs, healthcare organizations can save tens of thousands of dollars annually by reducing admissions to the hospital or long-term care facilities. Ruth paid a premium for her living unit, but it’s a far more satisfying living experience and less expensive than hospitalization or living in long-term care.
Ruth’s experience demonstrates how PROs benefit patients and health systems:
Along with the benefits of PROs and PGHD, however, health systems face a few challenges:
PROs are critically important to both care management and the emerging precision medicine movement:
The majority of patient activity and treatment occurs outside of the clinic or hospital, putting it beyond the reach of care providers and EHRs. Information patients collect themselves is critical as healthcare moves toward population health and care management. While many patients are willing to share this data with their clinicians, fewer health systems are currently able to do so.
In addition to genomic information, precision medicine leverages the combination of clinical, environmental, social, and behavioral factors to determine the precise treatment for any given patient. In fact, the White House-sponsored Precision Medicine Initiative calls for the combination of massive amounts of PGHD, clinician-generated information, and genomic data to better assess the efficacy of treatments and optimize plans of care for patients.
PROs offer an opportunity to capture needed information for use during care, with potential cost savings and improvements in quality of care, care management, and patient safety. This information allows patients like Ruth to remain independent and in control of their lives, which is empowering and can positively impact care and outcomes. Patients can feel like an integral part of the care team when they can contribute to the decision-making process. These and other benefits mean that PROs and PGHD will become increasingly important in the future of care delivery.
While the details have been changed to preserve anonymity, this story is based on a real patient. The technology discussed exists.
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