Prostate Cancer: A Couple’s Disease

Prostate Cancer: "A Couple's Disease" By Kathleen Hoffman, PhD, MSPH Prostate cancer impacts not just the physical health of the individual but also their emotional and social health. A study of patients and their partners compared satisfaction with treatment, worry about cancer, and the consequences of treatment on their relationship. Twenty-five percent said that their personal activities were negatively impacted by prostate cancer diagnosis and treatment and 42 percent reported their relationships with their partners, especially their sexual relationships, were negatively affected.1 Prostate cancer has been called a couple’s disease. A spouse posted in the ZERO [...]

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 [...]

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, [...]

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 [...]

Are You Listening to Patients? Patient Preferences and Clinical Trial Design

Are You Listening to Patients? Patient Preferences and Clinical Trial Design By Kathleen Hoffman, PhD, MSPH Last fall, over 1500 Inspire members living with sarcoidosis, scleroderma, ovarian cancer, prostate cancer, colorectal cancer, arthritis and psoriasis, completed a  survey on exploring patient preferences and insights on clinical trials. Our recent webinar, "A Hopeful Mindset," described preliminary results. Thirty-nine percent of respondents had cancer, 32% had a chronic condition - arthritis or psoriasis - and 29% had a rare disease. Over the next few months we will be sharing more details from the data.  Last week in "5 Benefits [...]

5 Benefits of Patient Focused Drug Development Sponsors Need to Know

The Patient Is Speaking: 5 Benefits of Patient Focused Drug Development Sponsors and CROs Need to Know By Sara Ray, MA Since the 2012 FDASIA reauthorization of the Prescription Drug User Fee Act (PDUFA) and the 21st Century Cures Act ‐‐ Directing and Enabling Patient Focused Drug Development in 2016, integrating the patient perspective has been a priority. Our research team has conducted studies with patient and caregiver Inspire members for a variety of sponsors. I'd like to describe how these research projects produce important patient insights that inform and can improve clinical trials. Patient focused drug [...]