Why Patient-Reported Outcomes Are the Future of Healthcare—and the Key to Ruth’s Independence

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.

Completing to Patient Health Picture

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:

1. Patients, not clinicians, are primarily responsible for capturing or recording these data.
2. Patients decide how to share or distribute these data to healthcare organizations and others.

Patient-Reported Outcomes Help Patients Like Ruth Live Independently

Ruth’s building is wired with sensors on the ceilings, walls, in key appliances, and in every room of the apartment:

• Motion sensors detect if Ruth falls or is starting to move more slowly over time, which may indicate a lower energy level, a loss of mobility, or a decline in cognitive function.
• A bathroom scale and digital blood pressure cuff record Ruth’s weight, body fat, pulse, blood pressure, and the CO2 in the room. If Ruth fails to get on the scale each day, it automatically reminds her to do so.
• Sensors detect whether Ruth takes food out of her refrigerator on a regular basis.
• Sensors on a medication dispenser indicate whether Ruth is routinely taking her medications.
• A “smart” cane has motion sensors to assess Ruth’s movements, speed, and location. The cane has an alert system that connects to the cell network and can alert a caregiver. The caregiver can choose to send a signal to tell Ruth help is on the way if she falls or becomes disabled.

The Digital Era Puts Patient-Reported Outcomes to Work for Better Health

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.

The Benefit of Patient-Reported Outcomes Outweigh Its Challenges

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:

• Supplement existing clinical data to fill in information gaps and provide a more comprehensive picture of ongoing patient health.
• Provide insight into patient health and wellness between medical visits.
• Gather information continuously—rather than at isolated points—and provide information relevant to preventive and chronic care management.

Along with the benefits of PROs and PGHD, however, health systems face a few challenges:

• PROs and PGHD are not yet widely used in clinical practice.
• Little is known about aggregating this data for measuring how well the health system is delivering care.
• Health systems must determine when and how to include this data in the medical record and care plan.
• Organizations must address usability, access, education, and other social issues to achieve widespread patient use.
• Once PROs and PGHD are widespread, health systems will need the storage and analytics infrastructure to manage the data growth.

Critical Data for Care Management and Precision Medicine

PROs are critically important to both care management and the emerging precision medicine movement:

More Insight for Care Management

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.

More Insight for Precision Medicine

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.

The Future of Care Delivery Depends on Patient-Reported Outcomes

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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