At Vanderbilt University Medical Center, patients receive an electronic questionnaire 72-hours before a clinic visit that asks questions about their specific health symptoms and experiences. In the pediatric asthma clinic, for example, patients might record how many times they have experienced a flare-up or used an inhaler.
The answers, which can also be submitted via a tablet in the waiting room, are added to a patient's electronic health record (EHR) and can be used to track their health outcomes over time. The data may improve patient/clinician communication and spur quality improvements and research, according to an article published by the center.
Ultimately, these Patient-Reported Outcome Measures, or PROMs, could be used in combination with machine learning to predict health results like readmissions. PROMs could also be a valuable tool for payers interested in examining cost of services and outcomes.
What are PROMs?
PROMs refer to self-reported patient surveys or questionnaires that ask key questions about someone's physical or mental health. A patient might report symptoms, their health-related quality of life, and behaviors such as smoking, diet, or exercise. These responses come directly from the patient and do not reflect any interpretation or confirmation from the clinician.
Depending upon the specific healthcare environment, there may be more targeted questions, such as whether someone can get out of bed on their own or stand without balance issues. Someone who recently had cataract surgery might be asked if they have experienced a meaningful improvement in their vision.
These measures are distinct from other commonly-used healthcare data markers like readmissions and hospital-acquired infections or objective health measures such as drops in blood pressure, explains a briefing from The Commonwealth Fund. Instead, PROMs attempt to capture whether the services provided actually improve patients' health and wellbeing. They can provide insights from the patients' own voice that can guide the clinical team in better understanding and managing their needs—improving health outcomes in the process.
Why is the importance of PROMs growing?
Healthcare providers are increasingly seeing PROMs as a valuable tool in understanding their patients' experiences, identifying concerns, and tracking progress.
PROMs are frequently used before and after surgery to gauge changes in the patient's quality of life. Since many common surgical procedures, such as hip and knee replacements, are intended to alleviate pain and improve function, patient experiences with post-operative pain may be more representative of a procedure's effectiveness than an imaging change.
Identifying the most useful PROMs for healthcare QI
Another key area of growth is determining the best design to capture patient experience and ease of completion. The order and layout of questionnaires matters, the Centers for Medicare and Medicaid Services (CMS) describes in a December 2022 report. While the definition of a “gold-standard" PROM is a work in progress, CMS does offer some guidance on usability criteria, pointing to factors such as:
- Ensuring there is a low burden to completion, considering length and time/effort
- Culture appropriateness (including translations)
Following a patient-centered approach to healthcare
This increasing awareness of the role of PROMs coincides with a growing emphasis and importance on person-centered care models. PROMs reflect a patient-centered model of healthcare since they provide a way for patients to directly communicate their health needs and experiences. Expanding the opportunities for communication can prove especially impactful for patients who may feel uncomfortable speaking up to their provider team.
The insight into patients' social needs and experiences can help the clinical team pre-identify support for that patient, such as connecting a patient to medical transport if transportation was flagged as a barrier to care.
PROMs can help gauge people's health as it corresponds to their day-to-day functions. For older adults, this might mean asking whether they can conduct selfcare or move around the home independently, write the authors of an article published in the Journal of Patient-Reported Outcomes.
“By capturing data to monitor and compare individuals' healthcare outcomes, PROMs can measure care effectiveness and contribute to its improvement."
Encouraging performance on health predictions
PROMs may also be used in making important health predictions. Researchers are examining the possibilities of combining patient survey data with machine learning to achieve better health models. Already, some early evidence shows promise.
A model that combined machine-learning algorithms with patient-reported outcome data was able to predict 180-day mortality for women with ovarian cancer, according to findings published in Scientific Reports. The algorithm correctly identified 25 of 35 women who died within 180 days of completing the assessment. That's helpful data since high-cost, high-intensity treatments at the end of a patient's life aren't associated with improved quality of life or medical outcomes, authors explain. This model could be used to drive data-driven end-of-life care decisions.
PROMs impact on palliative care
The American Academy of Hospice and Palliative Medicine has also taken strides toward improving end-of-life care through PROMs. Last year, the professional organization finalized 2 patient-reported outcomes measures intended to improve quality of care for people in hospice care. The measures address patients' experiences of feeling heard and of receiving desired help for pain. Among the reasons the group cited for enacting these measures:
- They put people at the heart of care, applying a patient-centered approach
- They align with the top needs people seek from their palliative care team
- They address gaps in care
- They can be used at the practice or institutional level to monitor the quality of care
Federal health agencies focus on PROMs
On the government side, agencies are increasingly looking at ways to develop and improve PROMs. The Food and Drug Administration is working on ways to advance the development of PROMs in several areas, including:
- Implementing a pilot grant research program to support the development of publicly-available datasets for patient-reported experiences with migraines and acute pain in infants and young children
- Working with academia to look at whether these measures might work differently among diverse patient groups, such as racial and ethnic groups, as well as among differing gender, age, and patient literacy levels as well as exploring how the measures could be modified to better capture symptoms in diverse patient groups
- Supporting the study of severe mental illness using survey data from mental health specialty and primary care clinics and exploring the use of models to predict suicidal behaviors
Striving for better electronic integration
CMS also outlined strategies for better incorporating patient perspectives and integrating patient voices. PROMs are just one way to work toward these goals, the agency said. Among the goals noted by the agency:
- Simplifying how to use PROMs and integrating them into the EHR workflow
- Developing efforts to improve PROM access and ease of use, such as including these in the patient portal
Identifying and exploring clinical barriers
But simply integrating PROMs into EHRs might not be enough to maximize their potential, a recent study points out. The article, published in late 2022 in the American Journal of Medical Quality, examined whether the promise of PROMs was being fully realized in a Midwestern large orthopedic setting.
Even though care teams regularly utilized PROMS among patients undergoing knee or hip surgery, care teams rarely utilized resultant data. Fewer than 1% of associated clinical encounters made use of the PROM survey results, despite their availability in patients' EHRs.
“This suggests that making PROMs available for care team review in the electronic health record, even when coupled with relatively high response rates from patients and departmental leadership support is not enough to encourage integration of PROMs into clinical care for patients," wrote the authors who noted the importance of better understanding clinical use barriers.
Gaps in data reveal room for improvement
Another challenge: there is still a dearth of evidence and use of PROMs in some fields of medicine. For example, a 2022-literature review published in the American Journal of Managed Care noted a “paucity of data" for the use of PROMs in pediatric populations.
The most addressed age group in the studies was 65 years and older, with the most commonly-used PROMs questions about the activities of daily living. Depression was the most common disease-focused questionnaire.
An additional complexity stems from finding the most relevant—and evidence-backed—PROM to use with patients. Many PROMs tend to be specific to a medical practice and procedure, which requires development time, resources, and costs.
Looking ahead to possibilities and potential
Amid ongoing challenges in measuring and compiling healthcare quality data, health policy expert David Lansky laid out a road map for their potential. In a Health Affairs piece, Lansky describes how PROMs could communicate a patient's function, symptoms, and quality of life at key milestones during a treatment path, sharing health snapshots that could be communicated in real time.
“These data could be immediately available to clinical staff to assist in determining treatment and monitoring progress, often accompanied by treatment guidelines," he writes. “Results could be routinely benchmarked to similar patients or to other practices serving similar patients, and risk adjusted as appropriate."
Standardized PROMs also will be key in evaluating which measures are improving health outcomes. Linking this information on other data such as race and ethnicity could also be useful in highlighting—and ultimately addressing—care inequities.
PROMs' success contingent on stakeholder support
Buy-in from all sides will be key in achieving this potential, Lansky notes. Patients will be more likely to provide information if they believe it will be used in their care. Similarly, providers will not be willing to add to their workflow unless they believe the data collected will lead to “cost neutral" care improvements, or they are required to do so because of value-based contracts. From the payer perspective, there needs to be a business case for patient-reported data's role. And, from the side of EHR vendors, changes will only come when clients demand it.
RTI Health Advance can improve patient healthcare experience
RTI Health Advance can help you model, track, and improve health outcomes through PROMs and other patient-centered approaches, data tools, and strategies. Our team of methodologists, educators, and scientists can help you design and implement approaches that translate into improved health outcomes while lowering healthcare costs.