Successfully developing and validating brand positioning and strategy in rare disease markets, whether with physicians or patients, requires a different set of market research practices. At ROF, we have identified five key distinctions that marketing and market research directors need to account for prior to implementing validation plans in these smaller markets:
- Fair Market Value (FMV) – Your Company, particularly your legal counsel, need to update their understanding of what truly is fair market value when working in market where there may be only 500 total patients in the US and potentially only 200 physicians who actively treat these patients. Given their small numbers, these patients and physicians often push the upper boundaries of standard FMV ranges. Be prepared to start near the top with regard to honoraria.
- Recruitment Sources – Use of traditional market research panels is often inadequate given the low prevalence of these patients and prescribers, and it’s not likely that another pharmaceutical companies has created a sampling history for your company to build upon. This necessitates getting creative with a variety of potential sources, including professional societies, formal advocacy groups, and organic patient associations that may exist only via an online presence. This creativity will also add time to your recruit, so set expectations appropriately.
- Interview Length – Dispel the notion that all research interviews need to be no longer than 55 minutes. Limiting providers and patients in these categories to only 55 minutes could mean missing out on critical intricacies of a likely complicated disease journey, let alone reactions to your stimuli.
- Sample Size – The standard 24 qualitative interview methodology can turn out to be a quantitative study in many rare diseases. Consider that 24 interviews in a disease where the US prevalence is 500 turns out to be almost 5% of the population. The equivalent in the 29 million US diabetic population would be a sample size of roughly 1.5 million!
- Sample Bias – It is impossible to minimize market research bias, but it becomes even more challenging in smaller populations. Recruiting from an online advocacy group requires adjusting your thinking. While you may generally shy away from conducting research with a pool of ‘hand raisers’ that you might perceive to be more educated than the general population of people with the condition, in rare disease markets it may be the difference between filling your sample and not.
In rare disease, the unmet need is often high and the approval timelines accelerated, which necessitates partnering with companies that not only understand how to develop good positioning and strategy, but also how to efficiently and effectively validate it with these tough to locate providers and patients.