Agility in Rare Disease Patient Market Research

Marketing and insights professionals have their hands full when supporting a brand in the pre-launch phase- they need to plan and conduct various types of research with physicians, payers, and patients. Not only is this time-consuming, but it can also put strain on budgets.

In this modern era of patient-centricity, it is generally accepted that incorporating the “voice of the patient” is critical through the product life cycle, from clinical trials through commercialization. This need becomes magnified for rare disease products, which are developed for patients who typically are very knowledgeable about their diagnosis and have much influence on treatment decisions. In fact, a recent PatientSight survey reveals that 79% of hemophilia patients and caregivers have either significant input into treatment decisions or virtually make the decision (with physician consent). For this reason and many others, life science organization understanding of the experience, perceptions, and attitudes of rare disease patients/caregivers is essential. 

Complicating this mission is the fact that approval times are often accelerated with rare disease products, and, therefore, market research deadlines are compressed. Fortunately, there are ways to improve efficiency in this process. One such method is to conduct online surveys. With today’s technology platforms, what used to take a month or more to complete a project can be reduced to 2 or 3 weeks, sometimes just days for a topline report. Also, a subscription model can eliminate much of the administrative work that is required to initiate new projects. 

PatientSight provides an agile approach for obtaining insights from rare and niche specialty disease patients. Partnered with gold standard panel recruiter Rare Patient Voice, PatientSight can connect life science organizations with hard-to-find patient communities. This is done with a subscription survey service that makes it easy to start new studies anytime needed. It is a scalable, enterprise-wide solution that can be used by any department in an organization that could benefit from these insights, whether that be Market Research/Insights, Marketing, New Product Planning, Medical Affairs, or other functions. 

PatientSight is a first-look source of information that can guide market researchers to the places that require further drill-down with in-depth interviews or other forms of deeper research. For smaller biotech companies with a very limited budget, PatientSight can be a cost effective single source of patient insights. Also, service providers who deal with many clients and therapy areas now have access to affordable and rapid patient insights whenever the need arises.