Why Patient-Reported Outcomes Are the Future of Healthcare—and the Key to Ruth’s Independence
After 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 that she needed more support to stay independent. Thus, she purchased a unit on the 12th floor of a high-rise retirement community in a major U.S. city where her two daughters and grandchildren lived. The building had been specifically designed to allow the elderly to age in place by employing technologies that allow elders to live independently for as long as possible.
How Patient-Reported Outcomes (PROs) Help Patients Like Ruth Live Independently
Ruth’s new building is “wired” with sensors on the ceilings, sensors on the walls, sensors in key appliances, and sensors in every room of the apartment:
- Motion sensors can 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—all potential signs of something physical going on.
- A bathroom scale and digital blood pressure cuff have sensors that record her 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.
- Ruth’s medication dispenser has sensors to indicate whether she is routinely taking her medications.
- Ruth’s cane is “smart” with motion sensors to assess her movements, speed, and location. The cane has an alert system that connects to the cell network and can alert a caregiver who can choose to respond with a signal to tell Ruth that help is on the way if she falls or becomes disabled.
The patient-reported outcomes (PROs)—also referred to as patient-generated health data (PGHD)—collected from the sensors in Ruth’s living environment are collected and transmitted through Bluetooth and the Internet to secure servers at the local academic medical center where Ruth receives her care. Artificial intelligence (AI) algorithms process the data to understand her living habits and movements to deduce low activity, fatigue, deteriorating appetite, medication noncompliance, and other changes that may be linked to a deteriorating condition. If there are signs of clinical deterioration, then the system automatically alerts Ruth’s care manager who can take the appropriate action as early as possible.
The emergence of smart phones, mobile applications, ubiquitous high speed Internet, and remote monitoring devices like sensors, coupled with providers’ implementation of EHRs, patient portals, and secure messaging, offer innovative new ways to connect patients and providers, and to strengthen patients’ engagement in their health and healthcare. These new technologies enable patients to generate important data outside of traditional care environments and share it with their care team to expand the depth, breadth, and continuity of information available to improve healthcare and outcomes.
Whether you are eighteen or eighty, almost all of us want to live out our lives at home. While some may view Ruth’s sensor-laden environment as intrusive, Ruth loves it because it supports her fierce desire to remain independent in her own home. The fact that PROs are only used by her care team to support her independence makes it a very acceptable alternative.
Definitions to Guide the Industry: What Are PROs?
The National Quality Forum (NQF) 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.” PRO 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) has emphasized the importance of PGHD, defining it 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 are not limited to, health history, treatment history, biometric data, symptoms, and lifestyle choices. The ONC points out that PGHD are distinct from healthcare data generated in clinical settings and through encounters with providers in two important ways:
- Patients, not providers, are primarily responsible for capturing or recording these data.
- Patients decide how to share or distribute these data to healthcare providers and others.
The Many Benefits of PROs Outweigh its Challenges
The potential value of PROs is enormous. Tens of thousands of dollars can be saved annually by each patient who avoids admission to the hospital or traditional chronic care facility. Ruth paid a premium for her living unit, but it was a far more satisfying living experience and far less expensive than hospitalization or living in a chronic care facility. There’s no doubting the many benefits of PROs and PGHD:
- Effectively supplement existing clinical data, filling in gaps in information and providing a more comprehensive picture of ongoing patient health.
- Provide important information about how patients are doing between medical visits.
- Gather information on an ongoing basis—rather than just one point in time—and provide information relevant to preventive and chronic care management.
Along with the benefits of PROs and PGHD, however, there are a few challenges to overcome:
- They are not in widespread use in clinical practice.
- Little is known about aggregating this data for measuring performance of the health system delivering care.
- Providers must determine when and how these data are included in the medical record and care plan.
- Usability, access, education, and other social issues must be addressed to achieve widespread patient use.
- Economic disparities must be overcome.
Once it is in widespread use, the sheer volume of PGHD will be an issue for care providers. However, this can be addressed through advanced analytic systems with AI and predictive analytics capabilities.
The Role of PROs in Care Management and Precision Medicine
PROs are critically important to both care management and the emerging precision medicine movement.
PROs and Care Management
The vast majority of patient activity and treatment occurs outside of the clinic or hospital, and is, therefore, beyond the reach of care providers and EHRs. It is not hard to see that information collected directly by patients is important, especially as healthcare moves toward population health and care management, and outcomes-based payment to address the quality and cost challenges facing the industry. While most patients are willing to share this data with their clinicians, few care providers are presently able to do so.
PROs and Precision Medicine
Precision medicine is not solely about genetics. It is about the combination of patient-specific genetic information with 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, information generated by clinicians, and genomic data to better assess the efficacy of treatments and to optimize plans of care for patients.
The Future of Care Delivery Depends on PROs
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. PROs have benefits that can’t always be tangibly seen in clinical or technical health initiatives. For example, the ability to allow patients like Ruth to remain independent and in control of their lives is tremendously empowering and can make a great deal of difference in 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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