This has been on my mind since last Thursday after an advisor to my research made an amazing comment. Thanks to the support from the Patient-Centered Outcomes Research Institute (PCORI), I have had the opportunity to engage a board of advisors made up of former hepatitis C virus (HCV) infected patients, physicians, pharmacists, and researchers to discuss ways to improve comparative effectiveness research for HCV treatments. During our most recent meeting, I asked the group how everyone would describe the “value” of new highly effective HCV medication. We had many great responses but one of the most striking to me was this:
People who have HIV see people being cured of their hepatitis and it gives them hope that one day they too will be cured.”
I have spent the last 3 years exploring the various economic considerations for HCV treatments and even published my first cost-effectiveness analysis of all available treatments in 2017. I have spent countless hours reading studies and reviewing HCV-related economic papers and have never once considered the hope that a highly effective treatment might instill in other patients.
Challenges for Researchers
When we think about costs and benefits of a treatment, we use data to estimate the dollars that we spend and we have a mixed bag of methods to tally up all of the intangible items. We struggle to accurately estimate many “indirect” costs and effects – or to put some number to more abstract concepts. But does that mean they shouldn’t be counted?
I’m sure an idea like hope means nothing to some people and it means a whole lot to others. From a market standpoint, aren’t we selling hope in a wide range of products? Many people are willing to pay $5 or $10 a week for the hope that they will win the lottery. Could we start by using survey methods to directly ask patients what hope might be worth to them? Or should we use observed methods to estimate what people actually spend on items that relate to chance/hope/risk?