The missing link: The importance of patient-reported outcomes on effective clinical decision making


When doctors and insurers want to evaluate a patient’s health status, they typically use objective and broad measures, such as laboratory and vital sign measures like blood pressure or hemoglobin A1c, utilization of healthcare resources such as hospital admissions and emergency room visits, and the number and types of medications a patient is taking. While these are good indicators, one important factor has been missing for far too long: the patients’ view of their own health and well-being.

In the transition to value-based care, patient-reported outcomes (PROs) have become a vital component. Rather than relying on a third-party view from a doctor or nurse, PROs provide a real-world assessment of healthcare’s effectiveness from those experiencing it firsthand. The additional information gathered gives providers a deeper understanding of the patient’s needs, which in turn, results in more personalized care and greater efficiency within a practice. Further, by measuring PROs, health systems can have a more accurate view of their success or shortcomings, as PROs ultimately show whether care a patient is receiving is making a true difference in helping that individual proactively manage their health, recover from illnesses, or live their best possible life with a chronic condition.

Ultimately, PROs are also important because they complete the picture of an individual’s health and fill in missing gaps in the healthcare continuum. By ensuring continuity of care, providers lead patients to experience better outcomes and higher satisfaction rates, combined with more cost-effective care delivery. PROs offer needed insights to inform clinical decision making, as well as how that clinical decision impacts the patient’s ultimate outcome.

Gathering and measuring the patient reported outcomes data

The first step in adopting PROs is collection of the patient data. Many practices still rely on paper-based surveys or phone calls to collect data, making it difficult and time-consuming for busy practices to integrate the information into the patients’ records, without disrupting the clinical workflow. The result is that this information is generally not incorporated into the medical record or clinical workflow in a meaningful way.

To streamline the process and make the information more timely and more valuable, automation and digitization are required. By offering online forms, portals, and apps, it is easier and more convenient for patients to provide information, even outside of the doctor’s office. The responses then can be easily integrated into electronic health records (EHRs) and generate data that drive the decisions clinicians make in delivering care.

To gain the best understanding and put PROs into practice, providers must adopt standardized patient-reported outcomes measures, which are the tools used to collect the PROs, and even develop new ones as needed. These often are designed to measure health-related quality-of-life factors, including symptoms, symptom burdens, personal experience of care, and health-related behaviors, such as anxiety and depression. They can also be used to gather information on social determinants of health, which can identify barriers to care and opportunities for additional patient support.

The impact of patient input on clinical decision-making  

These are factors that only the patient can address, so it’s vital that the patient’s voice is considered as part of the health record.

“The patient perspective provides a more holistic interpretation and a comprehensive assessment of the benefits of the treatment under investigation,” said a study published in the journal “Health Services Insights.” Plus, “bringing the patient’s voice into routine symptom assessment during clinical care offers the unique opportunity to enhance engagement and partnership with patients, while improving efficiency and quality by harnessing the existing infrastructure afforded by EHRs,” concluded another study published in the “Journal of the American Medical Informatics Association.”

Consider a healthy habits questionnaire for families that is done in conjunction with pediatrics appointments. This approach provides a way for doctors to facilitate quality conversations about healthy habits, assess social determinants of health and offer educational materials that support nine healthy habits to combat childhood obesity. It also encourages families and children to engage in goal setting, in terms of eating more fruits and vegetables, preparing healthy family meals, limiting screen time, and getting more physical activity and quality sleep. Once goals are set, patients, their family and physicians can assess confidence and follow up on progress of reaching goals by addressing PROs at future appointments. Adopting this practice and engaging families has shown to improve healthy eating habits at home and increase physical activity.

Informed clinical decisions impact patient outcomes

While getting more insights from PROs is vital in engaging patients to feel ownership over their health, it’s equally important that doctors use this information to make decisions that improve patient outcomes.  In fact, industry influencers state that “Optimizing PRO strategies to gather high-quality data can help improve clinical care and optimize value-based reimbursements.”

Leveraging validated questionnaires can result in quality responses from patients that then provide a basis for clinical decision-making. For example, PROs are an important element in determining treatments in dermatology. The Psoriasis Area and Severity Index (PASI) has been used as a “benchmark for evaluating treatment efficacy in trials involving moderate-to-severe psoriasis, especially when PASI response rate is similar between treatments.” Standardizing patient-reported outcomes measures (PROMs) across practices is important as it allows for quality measurement, research, and practice improvement over time. There are still many unmeasured outcomes or unique patient populations that PROMs must be developed for as medicine further embraces PROs as part of the patient health record.

As we move toward value-based and outcomes-based care, providers and health systems not only need to develop standardized PROMs for a variety of conditions, they need to implement technology that integrate collection of SDOH, patient goal information and PROs into a seamless system. One way to accomplish this is through FHIR-base PRO applications designed to exchange questions and patient responses with EHRs through standard resources. Digitized collection of PROs should be part of the clinical workflow, with patient responses included in the EHR and clinical notes.

Most importantly, we must make it frictionless for clinicians to leverage PROs in clinical decision making within their existing workflow. Leveraging technology to connect PROs with other forms of data in health records or remote patient monitoring and then supporting that with clinical decision support tools can enable doctors to make more patient-centric yet evidence-based decisions at the point of care.

Photo: designer491, Getty Images



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