Social Listening Identifies Unmet Needs of Rare Disease Patients: An Inspire Case Study

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January 16, 2019

By: Kathleen Hoffman, PhD MSPH

Recently, an industry client asked Inspire to conduct an exploratory social listening project to learn more about patients living with a rare immune disorder. In patients’ real-world online conversations, we identified a focus on dietary changes, restrictions, and dietary supplements.  Patients considered both pharmaceutical medications and dietary specifications, including supplements, as integral to their treatment journey and part of a holistic treatment plan. Despite this, many of the patients indicated that they received little or no counseling from their physicians. This communication deficit with their physicians motivated many of their online discussions. Without physician guidance on diet and lifestyle,  they explore options on their own.

For example, one member of a rare disease community on Inspire asked,

“all of the alternative remedies that people recommend in this forum have never been mentioned by [the doctor] to my dad. do you all find out about these alternative treatments through your doctors or through online research? do any of your doctors believe in or support alternative remedies?”

This communication gap between physicians and patients could have dangerous implications. For example, a subset of patients from our social listening study mentioned using curcumin, a naturally occurring chemical in the spice turmeric, to improve their condition. Yet curcumin has been shown to have detrimental side effects for patients with this rare condition.1

Unfortunately, the Dietary Supplement Health and Education Act, passed in 1994, allows these dietary supplements to be sold without testing for safety or effectiveness and without information on adverse effects or packaging that is child-resistant.2

Without physician guidance, many patients are unaware about potential adverse events or even potential positive outcomes. In our research, patients said that supplements may be not the sole answer, but may be one piece of a better solution. As a case in point, rare disease community member stated,

“In my humble opinion, when you are ill, ANYTHING that will make you feel better is worth a try as long as it does no harm. Not every “cure” will work for an individual because we are individuals.”

Overall, without support from physicians, rare autoimmune disease patients use trial and error and crowd-sourced knowledge on the Internet to direct their efforts.

Look for more insights in this Inspire case study, Understanding patient language, sentiments, perceptions and journey with Inspire Insights Discover: Social Landscape.

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