Why Limit Awareness Trial Usage Surveys (ATUs) to HCPs? Patients and Caregivers Provide Needed Insights

Why Limit Awareness Trial Usage Surveys (ATUs) to HCPs? Patients and Caregivers Provide Needed Insights By Richard Tsai One online glossary defining ATUs (Awareness, Trial, and Usage studies) described them, in part, as “survey[s] to measure consumer awareness, trial, and product usage for a product category and/or brand...” But in a pharma marketing context, it seems as if the participant in the study is almost always presumed to be the prescriber. More than one source researched for this article was written with that assumption. For example, an article on current updates on how ATUs are implemented [...]

Suffering Through the Opioid Crisis: The Language of Chronic Pain

Suffering Through the Opioid Crisis: The Language of Chronic Pain By Claire Harter, MA Market researchers in the pharmaceutical industry need to know their audience - their unmet needs, language, and experiences. Recent research in chronic pain at Inspire reveals the lexicon of chronic pain patients and their experiences with treatment. Pain Management History Documented widespread under-treatment of pain was a major medical health problem prior to the year 2000. The World Health Organization’s Cancer Pain Monograph detailed poor pain management of cancer and post-operative patients in 1986. Multiple publications throughout the 1990s on inadequate assessment [...]

Getting the Real Story from Patients

Getting the Real Story from Patients By Kathleen Hoffman, PhD, MSPH Humans evolved in a storytelling milieu where stories taught and explained the world around us. Our brains carry this legacy, research shows that the brain can store more information and retrieve it more easily when it is in story form. Narrative is easier to understand, is more engaging, and is an effective tool to communicate science to lay individuals.1,2 Personal narratives make science relatable. But mistakes made in the process of capturing a patient narrative can be cumulative. When writing native advertising (sponsored content), copy [...]

Getting the Most from Online Surveys

Getting the Most from Online Surveys By Kathleen Hoffman, PhD, MSPH Do you wonder about online surveys? Are they reliable? Is there bias? A recent article by the Pew Research Center For Weighting Online Opt-In Samples, What Matters Most? 1provides guidance to allay those concerns. Pew experimented with different procedures for weighting results from surveys with online opt-in samples to discover which techniques best reduced bias on estimates. They compared online results with the results given for 24 benchmark questions drawn from “high-quality federal surveys,” public surveys that were conducted using more traditional methods. This was [...]

How Does Pharma Learn to Speak Patient? The “Patient Voice”

How Does Pharma Learn to Speak Patient? The "Patient Voice" By Sara Ray, MA We have all, at one time or another, been patients. True or false? If you answer true, it is likely that you are a person who has experienced only acute illnesses, meaning you get sick, feel lousy, get treated, you feel better. You return to your normal activities. You get back to life. Before getting to the language of patients or “patient voice,” it is useful to understand that “we are not all patients.” Carolyn Thomas, writer and patient advocate, explains that, [...]

Researching Treatment Options Online Impacts Decision-Making

Researching Treatment Options in Online Communities Impacts Decision-Making By Kathleen Hoffman, PhD, MSPH Inspire members don’t just give each other encouragement – they often educate each other through their posts, and take new information to their own doctors. Some members have even found specialists in their conditions and chosen doctors and treatments based on what they learned from the Inspire community. Here are posts from some members talking about their experiences. Today I had another one of those 10-15 minute protocol meetings with my onc [oncologist] as I approach the end of yet another round on [...]

Respecting privacy matters

Respecting privacy matters By Kathleen Hoffman, PhD, MSPH In May, the HealthcareNOW radio program “Harlow on Healthcare” featured Inspire’s founder and CEO, Brian Loew speaking with David Harlow, host and health care law consultant. In the interview, Loew describes Inspire’s patient and caregiver members as a “rich and largely underutilized sources of expertise” about disease conditions and treatments, including medications. Access to this wealth of information requires profound respect for those owning it. “The Inspire community was created to meet the need people have to find information about their conditions from other people living with the [...]

Genetic testing: What patients and caregivers understand and value

Genetic testing: What patients and caregivers understand and value By Richard Tsai There’s been an explosion of information about genes, genetics and genomics since completion of the Human Genome Project in April 2003. Stories about remissions achieved through pharmacogenomics and immunotherapy and disease risk factors identified through genetic testing fill both online and offline media. Today, direct-to-consumer (DTC) genetic testing companies--which make kits available at between $100 and $200-- have huge databases of genetic information. In fact, even if you have never used a kit, you may be able to be identified through these databases if [...]

From Research To Action for Patients

From Research To Action for Patients It is exciting to see the results of research providing strong, positive benefits to patients. That was the take-away from a joint presentation made by Inspire and Strongbridge BioPharma at the Pharmaceutical Market Research Conference (PMRC) this month. Last fall, Strongbridge BioPharma engaged Inspire to find the “rarest of the rare”- people who have the exceptionally rare condition, primary periodic paralysis or PPP. There are between 4,000 and 5,000 diagnosed individuals in the US. Finding the Rarest of the Rare for Market Research: Patient Journey Mapping Through In-depth Interviews describes how [...]