How do we capture the patient voice to shape the future of care in the U.S.? The question is one that continues to be key for healthcare stakeholders nationwide, says Tom Valuck, partner at Discern Health.

A Different Attitude

“We’ve all experienced problems navigating the healthcare system, and we’re supposed to be the ones who understand it,” says Tom. “If I can’t figure it out, what are patients experiencing?”

Now, critically, there is a shift toward patient-centered care, adds Valuck. This is a far cry from how patient feedback was treated during his time as a Medical Officer and Senior Adviser at the Centers for Medicare & Medicaid Services (CMS) in the 2000s.

According to Valuck, the attitude toward patient-centeredness back then was wholly ironic: “We spent little time listening to Medicare beneficiaries,” he explains. “We were constantly debating patient care with providers, without paying attention to the patient voice.”

But that attitude is now in the past. Evolving insurance models, new data sources, and increased transparency are driving attention to patient input in care decisions and system reform.

The result is a growing and highly valuable resource, the patient voice, says Valuck, adding: “The positive impact of safety, self-care, and dignity all underscores the need for the patient voice in care.”

Empowering the Patient Voice

So how can the patient voice be empowered? According to Valuck, the answer lies in patient-reported outcome (PRO) measures.

Unlike traditional provider-focused outcome measures, PROs come straight from the person concerned and without any interpretation from a middleman. The result is a direct record of how a patient experienced or evaluated the results of their care. These are first-hand reports that help physicians better understand what matters most to their patients. This information can then be fed into patient care pathways and the overarching health system to improve understanding of individual and population needs.

“We’re not solely looking at the clinician’s perspective alone anymore. Now, we’re looking at the impact that care is having on the patient as well. PROs help us understand the key components of patient care,” Valuck explains. “Now, we can investigate important aspects of care like communication. Did patients receive essential information? Did they understand the resources they were given? What matters most to their quality of life? These haven’t been the primary aspects of care healthcare providers consider.”

Taking Steps to Promote Patient Engagement

“Now is the time for patient advocacy organizations to work together to capture and amplify the patient voice to make a difference,” says Valuck.

We can all take steps to promote patient engagement, not only on the front lines, but also in the health system more broadly, he explains. “Encourage patients to get involved and spark conversations about policy matters and system reform.”

Valuck summarizes his approach in three key points. The first: we manage what we measure. “If we don’t have measurements to identify the gaps in what we’re doing, we won’t know how to improve.”

The second: we get what we pay for. “Performance measurement is increasingly used for payment incentives to reward the type of care we want to see. If we want patient-centered care, we need more patient-centered measures.

And finally: we are the solution. “Nobody else is going to do this. We need to work together to advocate for measurement and payment solutions to bring more attention to the patient voice in care and system improvement.

“We want to make sure we’re reminding policy makers that it’s not just about clinical outcomes from the provider point of view – it’s also about how patients experience care and evaluate their outcomes.”