Analysis: Patient Voice Lacking in HCV Cost-effectiveness Research

A review of more than 1,000 studies found the vast majority of economic analyses of HCV therapies don’t incorporate patient input.

Studies that aim to determine the cost-effectiveness of hepatitis C (HCV) therapies generally do not make much effort to incorporate patient engagement and input, according to a new literature review.

The researchers looked at more than 1,000 cost-effectiveness studies of HCV therapies over a 5-year span (since 2012) and found that only a handful included a substantial patient input component in their models.

T. Joseph Mattingly II, PharmD, MBA, an assistant professor at the University of Maryland School of Pharmacy, told MD Magazine he became aware of the omission while developing a cost-effectiveness model for another recently published study.

“During the background research I read a ton of economic models on HCV and everyone seemed to be focusing on the same thing: Sustained Virologic Response — so I did too,” Mattingly said.

When Mattingly discussed the research with his mentor and University of Maryland colleague, Eleanor Perfetto, PhD, she suggested he consider potential patient benefits aside from simply curing the disease. Mattingly theorized whether if patients could find therapies worthwhile on account of quality of life improvements, even if the therapies didn’t succeed in curing the patient.

Mattingly wanted to heed Perfetto’s advice and incorporate quality-of-life and other patient-focused data, but he faced a problem: he couldn’t find any.

“When I told her this during the background work she simply smiled and said, ‘There is your paper,’” he said. “So I went back to the drawing board and designed the methods for a systematic review which you now see.”

Perfetto is a co-author of the new literature review.

Mattingly is unsure why patient input tends to be left out of cost-effectiveness studies, but he believes the omission represents a missed opportunity to gain a more holistic view of the effect a given HCV therapy is having on patients.

Mattingly is working on his PhD, and thus spends his time absorbed in pharmacoeconomic data. But he credits his colleagues at the University of Maryland with teaching him to value patient voice.

In publishing the review, Mattingly and colleagues hope to spark a discussion about the role patients play in testing and evaluating therapies.

“Unfortunately, most clinical and economic research go right into solving a question without involving patients in the beginning or throughout the study to ask them ‘Hey, do you care about this?’” Mattingly said.

There’s not enough data yet to know how the lack of patient voice might affect the results of cost effectiveness analyses, but Mattingly's currently studying that question.

However, including patient voice in the design of HCV studies would have benefits regardless of any effect it might have on the data, Mattingly said.

“Even if the patient perspective matches what economists develop on their own, by engaging patients in the process we have brought them into the black box of research and now have an advocate to help us disseminate our findings to the patient community,” Mattingly said. “I think it could be powerful in both improving our methods and improving the way our research gets implemented outside of the university.”

The paper, “Engaging hepatitis C infected patients in cost-effectiveness analyses: A literature review,” was in Hepatology last month.

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