Inspire Archives - Page 10 of 12

Patient Centricity: Joining Qualitative with Quantitative
Patient insights, Clinical trials, Marketing

Patient Centricity: Joining Qualitative with Quantitative

Patient Centricity: Joining the Qualitative with the Quantitative By Kathleen Hoffman, PhD, MSPH Reams of market research and data can provide insight, but so can one patient in the room, telling you what really matters to them.1~Paul Tunnah, PharmaPhorum founder The FDA’s drug approval process requires developers to submit quantitative data demonstrating that the treatment is safe and effective after testing in a representative target population. But if you’re accustomed to using quantitative studies to attain approval, you might be feeling jaded about patient centricity guidances. As Tunna’s article says, “...everyone seems keener to shout about [...]

Dec 2019By Inspire|0 Comments

Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Treatment Side Effects
Patient insights

Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Treatment Side Effects

Doing Better and Feeling Worse: Patients with Long-term Conditions Describe Drug Side Effects By Kathleen Hoffman, PhD, MSPH We live in fortunate times; people are now described as “living with” conditions. As an article in BioMed Central Health Services Research put it: Where previous generations experienced episodes of infectious and acute disease that were often rapidly lethal because there were few effective treatments,... major changes in the epidemiological and demographic landscape have led to increasing numbers of people with chronic or long term conditions such as diabetes and asthma; living with and surviving potentially life-limiting conditions, [...]

Dec 2019By Inspire|0 Comments

Getting the Real Story from Patients
Marketing

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 [...]

Nov 2019By Inspire|0 Comments

Getting the Most from Online Surveys
Patient insights

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 [...]

Nov 2019By Inspire|0 Comments

Getting the Most from Clinical Trial Protocol Feasibility Studies
Clinical trials

Getting the Most from Clinical Trial Protocol Feasibility Studies

Getting the Most from Clinical Trial Protocol Feasibility Studies By Monica St Claire Webinar provides expert tips for getting real feasibility data, optimizing trial design When the drug development process is at the point of moving to clinical trial, the next step is conducting a feasibility study. Stakeholders are all looking to hit the jackpot: figuring out the best place to conduct the clinical study, and identifying the design factors that result in maximum patient retention. Recently, the topic of the WCG Institute’s podcast “Stump the Experts” was feasibility. It featured Diane Carozza and Danya Kaye, [...]

Nov 2019By Inspire|0 Comments

Is There Any Way Left To Reach Patients?
Patient engagement

Is There Any Way Left To Reach Patients?

Is There Any Way Left To Reach Patients? By Hillary Kuhl As patients rely less on physicians as their ultimate information resource, their treatment decision-making has increased in complexity. Inspire’s most recent Annual Survey found almost a quarter of patients making treatment decisions alone, nearly 70 percent making treatment decisions in collaboration with their physicians and only nine percent leaving the decision to their doctor. Patient involvement in their care has dramatically increased: patients talk about treatment options at least every other doctor visit and almost half said they initiate discussions about new treatment options.1 While [...]

Aug 2019By Inspire|0 Comments

Getting Told You’re Making It All Up: Lupus
Patient communities

Getting Told You’re Making It All Up: Lupus

Getting Told You're Making It All Up By Kathleen Hoffman, PhD, MSPH Imagine going to see a doctor when you’re exhausted and enduring multiple kinds of pain, and they recommend a “psych” evaluation. When they “can’t find anything,” the medical professional you looked to for help decides you must be making it up. Many patients with conditions that mimic other disorders describe facing this challenge. Systemic Lupus Erythematosus (SLE or lupus) is one such condition. Members of the LupusConnect Support Community on Inspire describe going through Herculean efforts to find help, only to be disbelieved, or, [...]

Jul 2019By Inspire|1 Comment

Engaging Emails Meet the Mark: Fostering Relationships
Patient engagement

Engaging Emails Meet the Mark: Fostering Relationships

Engaging Emails Meet the Mark: Fostering Relationships By Linnea Madsen, Odin Soevik, Zeba Khan Inspire utilizes several strategies to engage with our members; one method is our Activity Summary emails. With the Activity Summary, we feature all new discussion posts, replies and reactions -- the activity – that occurs in all of a member’s communities. Members can choose to receive these summaries on a daily or weekly basis. Or they can opt-out. Over 600,000 Activity Summary emails are sent out on a daily basis to our members. For benchmarks on email engagement in 2018, Campaign Monitor obtained [...]

Jul 2019By Inspire|0 Comments

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

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, [...]

Jul 2019By Inspire|0 Comments

Researching Treatment Options Online Impacts Decision-Making
Patient insights

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 [...]

Jun 2019By Inspire|0 Comments