Electronic Patient-Reported Outcomes (ePROs)

A patient-reported outcome (PRO) is 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.¹ ePROs are simply PROs collected via electronic platforms as opposed to paper-based forms.

Typically, PROs are used to assess symptoms, side effects of treatment, and health-related quality-of-life (HRQoL) measures—like pain, nausea, fatigue, physical function, mobility, depression, and anxiety. Depending on the clinical context, a PRO can be a primary or secondary outcome metric. For example, PROs describing a patient’s physical functioning are a primary outcome for orthopedic surgery, but could be a secondary outcome in cancer care, where the primary outcome is tumor shrinkage, but physical functioning is still relevant.

Stakeholders frequently use the terms patient-reported outcomes, patient-centered outcomes, and patient-generated data interchangeably. While there is some overlap, the terms are distinct.

Key terms related to PROs

1. FDA’s and NQF’s definition of patient-reported outcomes, which is widely adopted as the industry-standard definition.

For some conditions, PROs are essential because they are the only way to measure the outcome of interest. The efficacy of a treatment designed to reduce pain or alleviate depression can only be assessed by a patient reporting pain scores or symptoms of depression.

Regardless of the specific clinical context, ePROs are important because they help to capture the patient voice. They allow clinicians and researchers to better understand a patient’s experience living with a condition or receiving a treatment—and do so in a way that provides standardized, validated data points.

Ultimately, ePROs enable high-quality, patient-centric care in three ways:

1. ePROs allow for more responsive, proactive treatment management
   
   A pivotal 2017 study¹ showed that cancer patients who regularly reported ePROs were able to tolerate chemotherapy for a longer period and showed increased survival rates. The study suggested that ePROs enabled clinicians to provide symptom management and treatment adjustments more proactively, since patients were reporting their health status in real time, outside of regularly scheduled visits.
   
   In addition to flagging when medical intervention is necessary, ePROs can also identify when intervention is not necessary. If a patient’s symptoms and side effects are within the normal range, it could eliminate the need for in-person touch points. Identifying when medical intervention is and isn’t needed can ultimately help providers save costs and succeed in value-based care arrangements.
2. ePROs reinforce patient-centered assessments of provider quality
   
   In addition to traditional metrics like readmissions, ePROs can serve as a patient-centered indicator of provider performance. In a comparison² of prostate cancer treatment outcomes in German hospitals, the key difference between average hospitals and top-tier hospitals was performance on patient-reported quality-of-life outcomes: lots of hospitals scored similarly on 5-year survival, but top-tier hospitals performed significantly better on PROs related to incontinence and erectile dysfunction. This kind of quality data can potentially inform payer decisions around reimbursement, contracting, and network inclusion.
3. ePROs provide a more nuanced, patient-centered understanding of treatment impact
   
   Outside of clinical practice, ePROs can help advance clinical research. By assessing quality-of-life outcomes, researchers and manufacturers (and ultimately, clinicians) can gain a more detailed understanding of how treatments work, beyond traditional safety and efficacy measures. Equipped with ePRO-based medical evidence, patients and clinicians can make more informed treatment choices that take into account both clinical and quality-of-life impact.

1. https://jamanetwork.com/journals/jama/fullarticle/2630810
2. https://www.martini-klinik.de/en/results/

ePROs are typically collected via validated surveys. They can be collected while patients are at home using smartphones or tablets, or during check-in right before an office visit. ePRO data is then shared with a clinician between or before a clinical visit and ideally integrates into the EHR.

Successful ePRO programs require two key features. First, programs must create bi-directional engagement between the patient and clinician: patients must be engaged enough to report outcomes on a regular basis, and clinicians must signal to patients they are utilizing ePROs to adapt care plans (so patients see that their time spent reporting outcomes is worthwhile). Second, ePRO programs must integrate into clinician and patient “workflows.” Several technologies exist to support this on the clinician side, but patients must also have the technology, technical literacy, and support to participate.

For organizations involved in ePRO-based clinical research—which can ultimately inform treatment decisions—ePROs must be collected in a standardized, systematic way. Although many standardized ePRO metrics exist, they are not always administered in a consistent enough way to enable large-scale data aggregation for use in research. Some organizations are building cross-industry partnerships to address this gap, bringing together vendors, provider organizations, payers, and life science companies where necessary.

Conversations focused on ePROs are likely related to ongoing conversations around care management and remote patient monitoring. To incentivize and finance ePRO programs, leaders should consider them as part of the larger infrastructure investments required to support the transition to value-based care and care at home.