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Listening Closely: Hearing the Voices of the Marginalized in Rare Disease

By Beth Baldys

Thu Feb 17 2022

The New Commonality of Rare Disease

The era of the “Blockbuster” pharmaceutical brand that treats tens of millions of patients for diseases like diabetes and high blood pressure has evolved into precisely targeted therapeutics addressing increasingly nuanced conditions and populations. Stunning advances in drug development research, coupled with the ascendance of digital technologies, have created a perfect storm putting the patient front and center of the healthcare system, where they belong.

At the heart of this patient-centric revolution is the acknowledgement that every human being is unique, necessitating a hyper-individualized approach to healthcare. Facilitated and encouraged by heavy investment in customized therapeutics and the rise of on-demand digital services, the treatment of rare diseases exemplifies the challenges and opportunities facing the life sciences industry today. Success is contingent on utilizing once unimaginable levels of personalization.

The convergence of digital health, drug development, and commercialization is also reverberating through the market research industry, where listening to the patient voice is now more important than ever before, especially for rare diseases. By empowering marginalized and disenfranchised patients to candidly share their opinions and feelings directly through their own phones, hurdles are overcome and opportunities created for everyone’s voice to be heard.

“Talking is the most natural thing people do,” insists Fabio Gratton, co-founder and CEO of inVibe, now a division of THREAD. “So if the right questions are asked, in the right way, then most people openly and honestly  answer. I started inVibe with that premise in mind, realizing early on that the whole point of market research is to reveal the hearts and minds of patients eager to express themselves through their own voices – if they’re willing to talk, and the industry listen.”

Tearing Down the Institutional Walls

But talking about their own health is difficult  for most people, especially the disenfranchised. Few people are enthusiastic about discussing their debilitating and sometimes  embarrassing diseases, made worse for marginalized communities accustomed to neglect, inequality, language hurdles, and limited access to technology – all made exponentially worse by the global pandemic. These compounding factors silence those communities that need to be heard the most.

“The paradox is that diverse populations are especially eager to have their voices heard,” continues Gratton, “but not in the way traditional market research is structured. Quantitative surveys feel anonymous and mechanical, while qualitative focus groups can be biased  and intimidating. So how can we expect particularly vulnerable minority populations to bare their souls in emotionally sterile settings that make them feel like we feel they’re sick and stupid?”

Feeling ignored at best, judged at worst, the underserved who suffer from rare diseases are finally being respected and heard: By asking them direct questions through their own phones, barriers of entry are removed and the democratization of healthcare can proceed with the help of creativity, innovation, and the sincere willingness to listen. Rare diseases, often populated by marginalized and hard-to-find patient populations, benefit from renewed insights and action.

Thanks to inVibe’s voice response platform, such unprecedented access to rare disease patient insights is spread along the entire pharma brand life cycle. Voice data collection, natural language processing and human linguistic analysis, and dynamic reporting convey actionable recommendations to clients starved for evidence-based decision making.

“From clinical trial designs to pharma marketing campaigns, once silenced voices are finally being heard,” beams Gratton.

inVibe Your Rare Disease Market Research

Pharma is increasingly motivated to treat and support rare disease communities, yet is strapped by layers of logistical, regulatory, and bureaucratic hurdles. These obstacles exacerbate the hesitancy of diverse, disenfranchised, and marginalized patient populations to share invaluable clinical trial and post-launch market research insights. By inVibing your trial designs, communication assets, and support programs, you can finally listen and act on their needs.

Thankfully much of the same technology used to personalize the services offered by Big Tech are now in the hands of savvy market researchers poised to energize the treatment of rare diseases. While taking privacy and confidentiality very seriously, inVibe has empowered thousands of patients across hundreds of disease states with the power of their own voice. Stop speculating about what your audience thinks, feels, and does, and start inVibing your brand. Request a demo today!

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