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 [...]

A Hopeful Mindset: Patient Insights on Clinical Trials Webinar

A Hopeful Mindset: Patient Insights on Clinical Trials Webinar By Kathleen Hoffman, PhD, MSPH In November 2018, Inspire sent a clinical trial perceptions research survey to caregiver and patient members with the following conditions: ovarian, colorectal and prostate cancer; scleroderma and sarcoidosis; and psoriasis and arthritis. Over 1600 respondents completed instrument. Members were asked, “If you were eligible for a clinical trial, how interested would you be in participating?” One "very interested" member explained, “Scleroderma is a rare autoimmune disease which has no cure, so any research would help the future.” Another stated, “I have advanced cardiac [...]

Wearable Devices Revolutionize Clinical Trials… But when?

Wearable Devices Revolutionize Clinical Trials...But when? By Richard Tsai Here is the vision: Wearable devices open the floodgates to clinical trial participation. Patient-centric and portable, they’ll free the participants from multiple visits to the clinical site. Technology collects millions of data points per user per day, and then transmits it directly to researchers. High participation and rich real-world data and evidence (RWD/RWE) streamline clinical trials, satisfy 21st Century Cures Act requirements, and yield what everyone wants – a faster track to drug approval. 1 That time is coming – the Apple Watch 4 won FDA approval as [...]

Hacking clinical trials: Two awareness and protocol strategies invented by patients and caregivers that work

Hacking clinical trials: Two awareness and protocol strategies invented by patients and caregivers that work By Kathleen Hoffman, PhD Patients with life-threatening diseases aren’t waiting for someone to make participating in clinical trials easier for them. They are breaking down the barriers themselves. Two of these innovative methods were described at a March 18 Clinical Trials Transformation Initiative (CITI)-FDA event, “Enhancing the incorporation of the patient perspective in clinical trials.”1 Breaking barriers to clinical trial awareness In 2012, Tom Marsilje and his team from Novartis presented a cancer drug he had co-invented at the annual American Society [...]

Why peer-to-peer online patient communities are important to patients, caregivers and pharma

Why peer-to-peer online patient communities are important to patients, caregivers and pharma By Kathleen Hoffman, PhD What do patients and caregivers say about online patient communities? Inspire posts, podcasts, and patient advocates concur on the powerful and varied benefits, especially in research collaborations and as a trusted source of treatment and clinical trial information. Opportunity for research collaborations As early as 2005, Inspire member, Katherine K. Leon searched for other people with Spontaneous Coronary Artery Dissection (SCAD). Slowly she found members in Inspire’s WomenHeart community. Motivated by a lack of information explaining why her coronary artery dissected, [...]