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 [...]

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Jun 2019By |0 Comments

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 [...]

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Jun 2019By |0 Comments

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 [...]

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Jun 2019By |0 Comments

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 [...]

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May 2019By |0 Comments

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 [...]

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May 2019By |0 Comments

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 [...]

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May 2019By |0 Comments

Redefining Life as a Patient and Caregiver : Experts by Experience 2018

Redefining Life as a Patient and Caregiver : Experts by Experience 2018 Parenting and caring for a child with a medical condition challenges Erin Moriarty Wade. She writes, “I know that the patient experience begins long before you meet the doctor. I know that sometimes even parking your car can become a big part of that experience–especially when you have to park at a distance with a cranky toddler in a stroller, and a child hobbling in pain. I understand the fear that patients may feel, and I appreciate the role of the oft-forgotten caregiver.” Early [...]

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Apr 2019By |0 Comments

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 [...]

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Apr 2019By |0 Comments

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, [...]

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Apr 2019By |0 Comments

Implementing patient centricity?

Implementing patient centricity? By Monica St. Claire Over 1,000 employees from bio-pharmaceutical, medical device and associated supplier companies responded to the Aurora Project’s recent Patient-Centric Benchmarks Survey. Of those respondents, 91% said patient centricity is important, a 6% increase from 2016. But only 30% believe the industry can make it a reality. Knowing how to be patient centric seems to be the missing ingredient. Only 22% of respondents agreed with this statement, “We know exactly what and how to teach [patient centricity] to our people.”1 While many articles call patient centricity a “mantra” and “cliché,”2 Inspire [...]

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Sep 2018By |0 Comments
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