Insights from AMCP Nexus: Understanding the impact of patient experience data on payer decisions

What inspired this research?

The importance of incorporating the patient voice into healthcare decision-making is key. The last two decades have seen a growing shift toward a more patient-centered care model, where patients and caregivers take a more active role in managing their own health decisions. The 21st Century Cures Act, which was signed into law on December 13, 2016, formally defined patient experience data (PED) as data collected by any person to provide information about patients’ experiences with a disease or condition, including the impact on patients' lives and patient preferences with respect to treatment. Also, in accordance with 21st Century Cures Act and the Food and Drug Administration (FDA) Reauthorization Act of 2017 Title I, the FDA has been actively involved, through its patient-focused drug development (PFDD) guidance series, in addressing how stakeholders can collect and submit PED and other relevant information from patients and caregivers for drug development and regulatory decision-making.  

Against this backdrop, our team of authors wanted to understand how PED was currently being used by payers to make coverage decisions, and what challenges they faced during the implementation process.  

 

Was there a hypothesis that was confirmed through the research?

The research sought to understand trends in payers’ use of PED in coverage decisions. It also illuminated a number of challenges that payers face in incorporating PED into their decision-making, such as data quality and reliability, as well as a lack of understanding and interpretability of PED. Our work enhanced our understanding of the trends and barriers in the use of PED in managed care organizations.  

 

There were three key takeaways from this research: 

1. The majority of surveyed payers (75 percent) have already incorporated or are planning to incorporate PED in coverage decisions. This shows that payers are actively considering PED data while making coverage decisions. 
2. Payers are most familiar with and have most often used clinician-reported outcomes (ClinROs) and patient-reported outcomes (PROs). These types of PED are typically reported in clinical trials, their methodology is generally clear and transparent, and is less open to subjectivity in their interpretation, which leads to greater trust among payers in their use. 
3. Roughly half of payers (53 percent) expect PED to play a larger role in their decision-making over the next 5 years.  

 

Was there anything in the research that was surprising, that you didn't expect?

We were surprised at the large number of payers that have already incorporated or are planning to incorporate PED in coverage decisions. Another thing that we found interesting was that roughly half expect PED to play a larger role in their decision-making in the next five years. To us, this data signals an increasing willingness by payers to consider the patient voice when making coverage and management decisions.  

 

What are the next steps from this research?

Since payers have identified a number of barriers—such as data quality and reliability, and lack of understanding and interpretability of PED— to fully implementing PED into their current decision-making processes, future research will dig deeper into these and other barriers to understand them better. Ultimately, we would like to identify ways these barriers to PED implementation can be overcome to smoothen the process for payers to incorporate the patient voice into their coverage decisions.