Inspire Archives - Page 7 of 12

For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments
Patient communities, Patient insights

For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments

For Psoriasis Awareness Month: The Psoriasis Support Community on Inspire Talks Treatments By Kathleen Hoffman, PhD, MSPH Try to list chronic illnesses that you think have a major effect on the person’s daily quality of life. You can probably think of several, but is psoriasis on the list? It ought to be. One Inspire member described his current symptoms in a post: Standing still in one place for five seconds feels like super pressure [around my] ankle and legs and hundreds of ants and burning. Sitting on a desk with step stool is little better in terms [...]

Aug 2020By Inspire|0 Comments

Patients Discuss and Debate the Medical Outcomes from Generic Formulations
HEOR, Patient insights

Patients Discuss and Debate the Medical Outcomes from Generic Formulations

Patients Discuss and Debate the Medical Outcomes from Generic Formulations By Jeff Terkowitz When mature products face the introduction of generics, patients are often considering, or asked to consider, switching their medications. At that transition, there is a high need for Real World Data documenting patient experiences. What happens to medical outcomes when patients switch medications? Where does a business get the Real World Evidence (RWE) about patient experience that is so needed during any transition from an exclusive formulation to the availability of competitive generics? A logical place to start is with the patient consumers. After [...]

Jul 2020By Inspire|0 Comments

HEOR: Incorporating the Human Costs and Benefits into Drug Value
HEOR, Patient insights

HEOR: Incorporating the Human Costs and Benefits into Drug Value

HEOR: Incorporating the Human Costs and Benefits into Drug Value By Kathleen Hoffman, PhD, MSPH In a 2007 article, “Pinning Down the Money Value of a Person’s Life,” NY Times reporter Alex Berensen wrote, “HOW much is your life worth? How about a year of life? How much is your vision worth? What about being pain-free? Able to walk unassisted? ... Economists are sometimes accused of knowing the prices of everything and the value of nothing. Now they are trying to answer what may be the most difficult question of all — the price of health.”1 Berensen [...]

Jul 2020By Inspire|0 Comments

The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments
Patient communities, Patient insights

The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments

The Bladder Cancer Advocacy Network Support Community on Inspire Talks about Treatments By Kathleen Hoffman, PhD, MSPH If asked to list the most common cancers in the U.S., most people would include breast, lung, skin, and prostate cancers. So you may be surprised to learn that the fourth most common cancer among men in the U.S. is bladder cancer.1 The estimate for 2020 is that new cases of bladder cancer will be diagnosed in 81,400 people.1 It’s the sixth most common cancer overall, and while 3 out of 4 cases affect men, women are more likely to [...]

Jul 2020By Inspire|0 Comments

FDA Finalizes First of Four PFDD Industry Guidances
Patient-focused drug development

FDA Finalizes First of Four PFDD Industry Guidances

FDA Finalizes First of Four PFDD Industry Guidances By Marina Ness, MA On June 16th, the FDA released the final version of “Patient-Focused Drug Development: Collecting Comprehensive and Representative Input.” This document, referred to as Guidance 1, advises industry on methodologies they can use to collect patient input that will be considered scientifically valid for the drug and device regulatory approval process -- including guidance on using input from social media. It is the first finalized version of the set of four planned guidances for making the patient perspective part of FDA regulatory approval. All of the [...]

Jun 2020By Inspire|0 Comments

How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes
Patient insights

How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes

How has the COVID-19 Pandemic Impacted Chronically Ill Patients? Patient Reported Outcomes By Kathleen Hoffman, PhD, MSPH Research in health and medicine has largely used quantitative methods. Using mixed methods, combining qualitative research with quantitative, is still relatively new. As the COVID-19 pandemic moved the world home and online, our team of qualitative researchers1 (while respecting member privacy) observed and documented themes within the online communication of chronically ill patients on Inspire. Inspire fielded a quantitative survey to document the impact. Telehealth Appointments In May the team observed and documented comments about telehealth appointments. They found patients [...]

Jun 2020By Inspire|0 Comments

Treatment Discussions of Rheumatoid Arthritis on Inspire
Patient communities, Patient insights

Treatment Discussions of Rheumatoid Arthritis on Inspire

Treatment Discussions of Rheumatoid Arthritis on Inspire By Kathleen Hoffman, PhD, MSPH When someone says “arthritis,” do you imagine an elderly person? When joints deteriorate through age and use, that’s osteoarthritis. But patients with rheumatoid arthritis (RA) are fighting being actively crippled by their own immune systems, a disease that is unrelated to age. According to the Global RA Network, 1 in every 100 people gets RA. Both the disease and its treatments entail widespread consequences.1 It’s not surprising that patients and caregivers discuss RA-related symptoms and treatments across Inspire, but especially in the Arthritis Support Community [...]

Jun 2020By Inspire|0 Comments

Bringing Patients and the Life Science Industry Together: Patient Advocacy +
Patient communities, Patient insights

Bringing Patients and the Life Science Industry Together: Patient Advocacy +

Bringing patients and the life science industry together: Patient Advocacy + By Robert Schultz “Progress is personal,” according to Bob Coughlin, President and CEO of the Massachusetts Biotechnology Council (MassBio) and the father of a graduating high school senior with cystic fibrosis (CF). Coughlin’s keynote opened a unique virtual event called Patient Advocacy +, organized by swissnex Boston in partnership with Inspire. Patient Advocacy + was a perfect example of why Switzerland opened swissnex Boston in 2000 in Cambridge, Massachusetts. swissnex Boston is Switzerland's first hub of science and innovation and, as such, a pioneer in intellectual [...]

Jun 2020By Inspire|1 Comment

Why Limit Awareness Trial Usage Surveys (ATUs) to HCPs? Patients and Caregivers Provide Needed Insights
Patient insights, Clinical trials

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 [...]

Jun 2020By Inspire|0 Comments

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice
Patient insights, Clinical trials

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice By Kathleen Hoffman, PhD, MSPH The most persistent hurdle in running a clinical trial is recruiting and keeping participants. More recently, the FDA added the expectation that the value of released drugs be supported with Real World Evidence (RWE). A recently-conducted multi-center prospective observational study accomplished both by using patients as partners throughout clinical design. The PROP-UP study was a designed to collect real world patient centered data on the harms and benefits of the new, highly effective, direct-acting antiviral [...]

May 2020By Inspire|0 Comments