Inspire Archives - Page 6 of 12

Recruiting Rare and Oncological Patients? Top Pharma Turns to Inspire
Clinical trials

Recruiting Rare and Oncological Patients? Top Pharma Turns to Inspire

Recruiting Rare and Oncological Patients? Top Pharma Turns to Inspire By Jeff Terkowitz Did you know that 80 percent of Inspire’s members agreed to receive information from Inspire about clinical trials? That’s about 1.6 million members with conditions in oncology, rare diseases, autoimmune disorders and chronic conditions who want to know if and when trials affecting their condition might be recruiting. Pfizer needed to find rare patients with genetic resilience to lung cancer. On Sept 23, the Breakthrough Staff at Pfizer wrote, Normally, discovering a small cohort or one or two families who meet such criteria might [...]

Nov 2020By Inspire|0 Comments

Good News about Lung Cancer? Thanks to Bench Science and Pharma
Patient communities, Patient insights

Good News about Lung Cancer? Thanks to Bench Science and Pharma

Good News about Lung Cancer? Thanks to Bench Science and Pharma By Kathleen Hoffman, PhD, MSPH Targeted therapies, monoclonal antibodies, and immune checkpoint inhibitors are the good news - making a significant difference in lung cancer mortality, a new study states. Published in The New England Journal of Medicine, the report said, “Mortality from NSCLC decreased even faster than the incidence ...and this decrease was associated with a substantial improvement in survival over time that corresponded to the timing of approval of targeted therapy.” 1Posts and reassurances that people read while visiting the American Lung Association’s Lung [...]

Nov 2020By Inspire|0 Comments

October 13th is Metastatic Breast Cancer Awareness Day
Patient communities, Patient insights

October 13th is Metastatic Breast Cancer Awareness Day

October 13th is Metastatic Breast Cancer Awareness Day By Kathleen Hoffman, PhD, MSPH The symbol for breast cancer awareness is a pink ribbon. But for people with the disease, one month and a pink ribbon are not enough. Many cancer drugs are evaluated by the amount of time the treatment delays progression, and despite new treatments and genetic advances, the 5-year survival rate for advanced or metastatic breast cancer is still just 27%. As Judy Perkins, diagnosed with metastatic breast cancer in 2013, said, “I have little interest in pink ribbons… I don’t want a ribbon. I [...]

Oct 2020By Inspire|0 Comments

September is Blood Cancer Awareness Month
Patient communities, Patient insights

September is Blood Cancer Awareness Month

September is Blood Cancer Awareness Month By Kathleen Hoffman, PhD, MSPH The term “blood cancer” encompasses so many complex disorders that Inspire has several support communities focused on blood cancers, including groups for Leukemia, Lymphoma, Myeloma, and Myelodysplastic Syndromes (MDS). According to Inspire’s partner, the Leukemia Research Foundation, these four blood cancers impact about 1.3 million people in the United States and their families.1 This year there are expected to be 60,300 people newly diagnosed with leukemia; 83,200 with Hodgkin or non-Hodgkin lymphoma; and 31,000 with myeloma.2 Myleodysplastic syndromes are rarer, with an estimated 10,000 cases total [...]

Sep 2020By Inspire|0 Comments

For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire
Patient communities, Patient insights

For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire

For Ovarian Cancer Awareness Month: Teal Sisters Support Each Other and Discuss Treatments on Inspire By Kathleen Hoffman, PhD, MSPH September is Ovarian Cancer Awareness Month. The Ovarian Cancer Research Alliance (OCRA), Inspire’s partner, is holding its 2020 National Conference, “Uniting for Hope,” virtually from Sept. 29 - Oct. 2 this year. One of the conference’s popular gatherings is always “Ask the Experts,” Q&A sessions between attendees and specialists. The topics this year include genetic testing, clinical trial participation, and managing recurrence. Another top event is the Teal Takeover Party, where Teal Sisters and their friends get [...]

Sep 2020By Inspire|0 Comments

Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable
Patient insights, Patient communities

Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable

Online Health Communities Change Patients’ Journeys: A Live Virtual Roundtable By Dana Deighton In the fable of the Ugly Duckling, the duckling feels isolated by his differences until he discovers that he is a swan too. Patients with undiagnosed conditions also feel isolated, with some even describing not being believed by their doctors or even their friends or families. One member with scleroderma shared her story: I spent 27 years seeking help --- every type of specialist, tests, hospitalizations, medications of every type, anything to put a name to my misery, not being treated like an attention-seeking patient. [...]

Sep 2020By Inspire|0 Comments

Next Generation Online Health Communities
Patient insights, Patient communities

Next Generation Online Health Communities

Next Generation Online Health Communities: Data empowering patients and caregivers improves care and accelerates research By Richard Tsai The World Orphan Drug Congress USA 2020 (WODC 2020) provided four days of powerful panels and keynotes about collaborations, successes and failures in creating what rare disease patients and families need and desire most – effective treatments for their conditions. In one failure turned to success, Kim Stephens shared her story involving inappropriate clinical trial endpoints. Stephen’s son has Hunter Syndrome, an extremely rare inherited condition where children lack an essential enzyme in their cells that eliminates waste . [...]

Sep 2020By Inspire|0 Comments

Accelerating Rare Disease Research
Patient insights, Patient communities

Accelerating Rare Disease Research

Accelerating Rare Disease Research By Richard Tsai COVID-19 has challenged the non-profit arena’s fundraising arm, which is largely based on face-to-face events like galas, runs and walk-a-thons. This limit on the number and amount of donations has occurred just as rare disease patient organizations have reached a tipping point in their influence on government and industry. According to Malcolm Gladwell, the “tipping point” is “the moment of critical mass, the threshold, the boiling point,” where “ideas...spread like viruses do.” 1In this case, the tipping point refers to the efforts made by rare disease patient organizations to provide [...]

Aug 2020By Inspire|0 Comments

COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials
Clinical trials, Patient insights, Patient-focused drug development

COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials

COVID-19 and a Future with Fundamental Design Shifts: Incorporating Virtual into Clinical Trials By Kathleen Hoffman, PhD, MSPH On a recent Pharma Talk Radio podcast called, The Impact of COVID-19 on Clinical Trials: Where are We? And Where are We Going?, three subject matter experts discussed how they see COVID-19 impacting the future of clinical trial research. What needs to change?1 The experts were Ray Dorsey, MD, the David M. Levy Professor of Neurology and Director of the Center for Health & Technology at the University of Rochester; Matt Kibby, President and Principal of BBK Worldwide; and Craig [...]

Aug 2020By Inspire|0 Comments

Customer Loyalty and Service Insights for the Pharmaceutical Industry
Clinical trials, Patient engagement, Patient insights, Patient-centered healthcare

Customer Loyalty and Service Insights for the Pharmaceutical Industry

Customer Loyalty and Service Insights for the Pharmaceutical Industry By Dana Deighton “Only nine percent of U.S. consumers believe pharmaceutical and biotechnology companies put patients over profits.” This sentiment, found in the 2016 Harris Poll of Reputation Equity and Risk Across the Health Care Sector, has stayed fairly consistent in Harris polls until recently.1 In this year’s April and May series of surveys around the COVID-19 pandemic, Harris asked the question, “How has your view of [the Pharmaceutical Industry] changed since the start of the coronavirus pandemic?” In both the polls, 40% of respondents had a more [...]

Aug 2020By Inspire|0 Comments