In 2018, the Patient-Centered Outcomes Research Institute® (PCORI®) funded a rapid-cycle research project called the Implementation of Patient-Reported Outcomes Measurement in Routine Clinical Practice for Heart Failure Patients in PCORnet.
Led by Justin Bachmann, MD, MPH, at Vanderbilt University Medical Center (VUMC), the study has had a lasting impact – expanding the use of patient-reported outcome measures (PROMs) and improving care across treatment areas. It also laid the foundation for Bachmann’s study published in 2025 in the Journal of the American College of Cardiology.
In a recent Q&A session, Dr. Bachmann reflected on how the rapid-cycle research project inspired him and his team to develop the Vanderbilt Patient-Reported Outcomes Measurement System (VPROMS) – a system that leverages data insights from more than 3 million PROMs collected in routine clinical practice to drive meaningful improvements in care.
What were your initial research questions and how did you imagine the results might inform healthcare delivery?
The project’s primary goal was to integrate the Kansas City Cardiomyopathy Questionnaire (KCCQ-12), a validated PROM that assesses heart failure symptoms and quality of life, into electronic health records at Vanderbilt, Duke, and UPMC. At the time, the KCCQ-12 was used primarily in clinical trials. We aimed to build the infrastructure needed to collect this measure in routine clinical practice. That shift was important because PROMs can serve as an “x-ray” of the patient history.
What led you to use PCORnet for implementing PROMs in clinical care for heart failure research?
The biggest draw was the PCORnet® Common Data Model (CDM) and its potential to scale. We already knew PROMs add value – when used in clinical practice, they can improve patient care and satisfaction.
The challenge is collecting and studying PROMs in routine clinical practice, especially across multiple sites. Standardizing the data is difficult. A PROM includes multiple data elements, and the scoring logic required to calculate a final score in the EHR can be complex.
The PCORnet® CDM gave us a way to standardize those data elements. It also allowed us to link PROMs data with other real-world data, such as lab values, that were already standardized in the EHR, which was fantastic.
While the PCORnet® CDM provides strong data references for PROMs, aligning the electronic health records across three different institutions was still a heavy lift. The Coordinating Center for PCORnet® played a critical role, serving as a bridge between the clinical and research perspectives and the technical capabilities of the PCORnet® CDM. Their support was essential to the project’s success.
What challenges did you encounter during the initial study?
Initially, I planned to fly to Duke and UPMC to meet with Epic developers and investigators, but this was in 2020, and COVID-19 halted business travel. As a result, the Coordinating Center stepped in to help facilitate outreach and collaboration across sites.
We had numerous virtual meetings to address data standardization. For example, one site was using “PRO response number” while another was using “PRO response score,” so we had to reconcile those differences to ensure consistent scoring. We also encountered early issues with the scoring logic, which the Coordinating Center helped us resolve.
Ultimately, working through the process of addressing all these standardization challenges was a major output of the study.
How did your findings from the initial study influence the design and focus of the subsequent study?
The initial project built the infrastructure – the “pipes” – needed to collect and standardize these data, and we sustained that framework at Vanderbilt. We continued collecting the KCCQ-12 for the next 5 years, ultimately building one of the largest real-world data sets in the world focused on outcomes that matter to patients.
That first project tested feasibility. Could we reliably collect these measures in routine care? Could we standardize them across systems? And was the KCCQ-12 performing as expected with other measures we were collecting, such as the PROMS-10 and the PHQ? The answer was yes – the PROMs behaved as anticipated.
In the subsequent study completed in 2024, we pivoted from feasibility to prognostic utility. Instead of asking whether we could collect the data, we asked whether the KCCQ-12 could predict clinical outcomes. It turns out that it can.
In fact, the KCCQ-12 emerged as the strongest predictor of hospitalizations and mortality among all other EHR-collected variables for heart failure patients in routine clinical practice. Without the initial PCORI-funded rapid-cycle research project, we would not have been able to sustain the data collection necessary to conduct the follow-up study.
Since then, we’ve strengthened and expanded the framework. Lessons from the rapid-cycle research project informed the development of the Vanderbilt Patient-Reported Outcomes Measurement System (VPROMS). Through VPROMS, we collect 200 to 300 different PROMS across a wide range of departments at VUMC in approximately 30% to 40% of all outpatient encounters, and we have collected more than 3 million PROMs to date.
After the initial PCORnet project, we continued to collect the KCCQ-12 in routine clinical practice and now have PROMS data from more than 10,000 patients with heart failure. There are a lot of future studies that are going to come out specifically on the heart failure data, but the information about VPROMS in clinical care isn’t helpful just with heart failure, it’s helpful in a variety of outpatient and research settings. For example, VUMC researchers have published papers on using VPROMs to determine when patients get surgery for diverticulitis and to inform care in neuro-oncology.
How did your initial research lay the foundation for future studies utilizing the PCORnet® CDM and other initiatives to improve patient outcomes?
From the outset, one of our key questions was: “How are patients who complete the PROMs different from patients who do not?” In the initial project, we saw signals that patients who didn’t complete PROMs were generally older, they’re sicker, and more socially disadvantaged.
In our 2024 study, patients who didn’t complete the KCCQ-12 had approximately 70% higher odds of hospitalization within 90 days and 50% higher mortality within one year. These findings underscore the importance of focusing on non-completers, as they have much worse outcomes than patients who complete the questionnaire.
At a foundational level, our project reinforced the importance of data standardization – ensuring alignment on how data elements are defined, stored, and shared. That may sound basic, but it is essential for conducting multi-site pragmatic trials and other comparative clinical effectiveness research using PROMs data. A major benefit of the project was translating what we learned – particularly in collaboration with the Coordinating Center – into practical guidance that can help other institutions conduct multi-site studies using standardized PROMs data.
Ready to learn how you can access PCORnet multi-site research expertise and resources to support your patient-centered study? Contact the PCORnet® Front Door to start the conversation.