Social Listening to Understand the Unmet Needs of Patients

Social Listening to Understand the Unmet Needs of Patients By Marina Shayevich and Sara Ray Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than in rare diseases, where the rarity of the illness may lead to a scarcity of available, approved pharmaceutical treatment options. Many patients are left to turn to off-label medication use in the effort to get the best solution possible. Even then, these treatments do not [...]

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Dec 2018By |0 Comments

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration

What Matters Most to People Impacted by Rare Disease: An Inspire-FDA Collaboration By Sara Ray What happened when we compared research strategies used to obtain patient insights? We discovered that using multiple strategies is key to gaining usable understandings. In a recent collaboration between Inspire and the FDA, we compared and contrasted patient and caregiver generated online communication with the results of one of FDA’s Voice of the Patient meetings. The Data Sets Inspire’s membership includes over 350,000 patients and caregivers living and coping with rare diseases. In the last three years, there has been 203% growth [...]

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Nov 2018By |0 Comments

How You Can Achieve Patient Focused Drug Development

How You Can Achieve Patient Focused Drug Development By Monica St Claire The application of a sociolinguistic lens can glean hidden meanings within seemingly ordinary communications. On the Society of Linguists website, Walt Wolfram, director of the North Carolina Language and Life Project at North Carolina State University said, “We use language to send vital social messages about who we are, where we come from, and who we associate with.” Wolfram says that we can learn much about a person just by their choice of a single word.1 In the area of health communication, linguists identify [...]

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Nov 2018By |0 Comments

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s position paper from 2017 clearly describes the dilemma faced in rare disease research. Lab measures and organ size don’t speak to what patients with rare diseases experience, need or value. This focus on measures that are not meaningful impacts the development of rare disease treatments [...]

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Oct 2018By |0 Comments

How R&D Teams Can Use Patient-Centricity for Clinical Trial Optimization

How R&D Teams Can Use Patient Centricity for Clinical Trial Optimization By Monica St. Claire In 2014, Tufts Center for the Study of Drug Development performed a comprehensive assessment of the use of social media and digital technology in clinical research. This forward-thinking study revealed that pharmaceutical, biotechnology companies and contract research organizations (CROs) had not implemented strategies to effectively utilize and capitalize on the patient and caregiver content available.1 Today, Inspire’s products and services address these clinical trial optimization essentials. Specifically, our tools provide pharmaceutical and biotechnology companies’ research and development (R&D) teams as well [...]

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Aug 2018By |0 Comments

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community

Launching communities with Inspire: The Pancreatic Neuroendocrine Tumor (PNET) Support Community For patients and caregivers facing rare cancers, finding others going through the same experience is challenging.  Yet, communicating with others who have “been there” is essential support. This can be especially true when statistics and online information about rare disease -  out of context -can be frightening. In 2011 Inspire’s moderation team found over 2900 mentions of carcinoid and over 200 mentions of neuroendocrine tumor in posts across all the cancer communities of Inspire.  Patients, caregivers, and others affected by pancreatic [...]

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Apr 2018By |0 Comments

The Case for Online Consumer Recruiting

The Case for Online Consumer Recruiting Over the past few years, recruiting for consumer healthcare market research has undergone a drastic change. In the past, pharma clients would take their business questions to their research vendors, who could easily leverage panel companies to fill the desired project samples and ultimately deliver successful insights back to their clients. As the industry has shifted its focus to oncologic conditions, rare diseases, orphan drugs and otherwise underserved populations, vendors are struggling to access these small, unique patient populations, resulting in partial, or even total, failures in fielding. I recently addressed [...]

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Jan 2018By |0 Comments

Virtual Patient Engagement: Inspire and the NIH Clinical Center

Virtual Patient Engagement:  Inspire and the NIH Clinical Center Engagement with patients and caregivers is at the heart of Inspire’s community of cancer, chronic, and rare disease support groups.  While there are many ways Inspire can help the industry engage with a targeted patient population, virtual patient engagement  and authoritative expert content are central to that engagement.  For example, we recently conducted five webinars and started a new discussion post series called “Ask the Expert.” During these webinars and through the question-answer format of the “Ask the Expert” series, Inspire educates and engages members, [...]

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Jan 2018By |0 Comments

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis In patients who have pulmonary fibrosis, the moist, elastic lung tissue starts to thicken and scar making it increasingly difficult for blood to get oxygenated. As scarring builds up over time in this progressive disease, the amount of oxygen getting to the brain and other organs of the body significantly diminishes. Idiopathic pulmonary fibrosis is part of a larger group of illnesses called interstitial lung disease (ILD). Idiopathic pulmonary fibrosis (IPF) is a rare subset of this chronic disease.  Its cause is unknown, though it can run in [...]

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Aug 2017By |3 Comments

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis

Video Vignettes: Through Their Own Lens: Living with Sarcoidosis “Imagine being in a crowd and wishing you were invisible, but you’re marked, and there is nowhere you can hide.” Shanene Higgins wrote that in her essay “Marked: My scars remind me of my purpose,” part of Inspire’s 2017 Experts by Experience eBook. Higgins has sarcoidosis, an inflammatory disease that can cause rashes and sores on the skin. Part of Higgins’s experience was bullying: “There were many times when people would stop and stare at me as if I was a fish in a fishbowl…One afternoon while walking…I [...]

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Aug 2017By |1 Comment