Why Patient Engagement Matters in HCV

Last week we published a literature review of economic models published on new hepatitis C virus (HCV) treatments over the past 5 years.  I’ve spent quite a bit of time studying the methods economists use to determine “cost-effectiveness” in these models and started to notice a trend: everyone goes through the motions of building a model without really engaging patients suffering (or who have been cured) from the disease.  We decided to do a systematic review to identify any economic studies where the authors demonstrate some sort of patient engagement and out of 757 eligible articles only 7 papers seemed to have engaged patients along the way.  If you are curious about our methods or results please feel free to check out the full-text paper in Hepatology, but for the rest of this post I’d like to throw out a few ideas and opinions.

Why aren’t patient engagement methods used to build economic models?

When I started the PhD program at the University of Maryland, my interest focused solely on drug pricing and determining cost-effectiveness.  All of the example economic models and text books I studied showed how you could engage a group of experts (typically physicians or researchers who specialize in the disease state, rarely patients) to help inform how you build your model.  Then you would use meta-analyses and systematic reviews to determine a range of values or predictions of what would happen throughout the cycles of your model.  So when I started building my first economic model to determine cost-effectiveness of HCV medications, I simply followed suit and developed a model based on previous research.  It was a lot less complicated to do all of this from my 4th floor office in the school of pharmacy with no direct patient interaction.

What could patient engagement tell us?

In the case of HCV, economic models focus on sustained virologic response (SVR), which is a fancy way of saying that the virus is gone from your system.  This is considered a “clinical cure” by the field.  So once a patient is cured of HCV, is that it?  What happens after the virus is gone?  Does the patient return to a perfectly healthy life and is welcomed back into his or her community with open arms?  Chronic HCV is a complex disease that goes well beyond the physical damage to the tissue in the liver.  Patients who live with the disease often face many psychological and socioeconomic challenges from worsening relationships between family and friends who are scared to touch them to extreme fatigue preventing them from being productive at work – resulting in potential job loss.  So does clearing the virus erase all of these challenges from the patient’s life?  This is what I hope my future research can evaluate.

Future Directions

I have a proposal under review right now to build relationships in the HCV community, particularly in groups with significant socioeconomic challenges.  I’ll also be working with a colleague, Neha Pandit, on evaluating medical claims in a large national dataset to see if we can find any trends or patterns.  If you are interested in collaborating or developing your own research in this area please don’t hesitate to reach out.  More to come!

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Joey Mattingly, PharmD, MBA is an assistant professor at the University of Maryland School of Pharmacy located in Baltimore, Maryland. Joey has managed retail and long-term care pharmacy operations in Kentucky, Illinois and Indiana. Leading Over The Counter is a blog of Joey's views and opinions on the topics of pharmacy leadership and management and do not represent the University of Maryland, Baltimore. Joey can be followed on Twitter @joeymattingly.

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