Searching For Colorectal Cancer Treatment Answers

Searching For Colorectal Cancer Treatment Answers By Kathleen Hoffman, PhD MSPH Inspire members discuss their colorectal cancer (CRC) treatment options and choices in the Fight Colorectal Cancer Support Group on Inspire because there is a lot to discuss. While it’s the third most common cancer in the United States,1 determining a course of treatment for an individual’s CRC is a multi-step process.2 A positive test is followed by other tests: biopsies, scans, blood tests, sigmoidoscopy, colonoscopy, or others.3 Surgery is the most common treatment; but treatments can include chemotherapy, radiation, radiofrequency ablation, and cryosurgery; some are determined [...]

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Apr 2020By |0 Comments

Members Find Support on Available Treatments for Osteoporosis

Members Find Support on Available Treatments for Osteoporosis By Kathleen Hoffman, PhD MSPH While the CDC is urging the public and the medical community to delay “all elective and ambulatory provider visits,” Inspire’s partner, the National Osteoporosis Foundation (NOF), is stressing the need for osteoporosis patients to adhere to their medication schedule, including medications that require provider administration. “It is extremely important that patients taking… (anti-osteoporosis) medications administered by a healthcare provider stay on time for scheduled injections.”1 They then list several common medications that fall into this category. This complicates an already challenging condition for the [...]

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Apr 2020By |0 Comments

How is COVID-19 Impacting Patients and the Life Science Industry?

How is COVID-19 Impacting Patients and the Life Science Industry? By Jeff Terkowitz As a virtual business, Inspire has a head start in dealing with social distancing and COVID-19. Many of our employees work virtually. Our patient and caregiver members have always communicated virtually and during this time are actively engaged in discussing the impact the Coronavirus and COVID-19 are having on their behaviors, concerns and needs. Proactive as ever, Inspire created a new resource for Coronavirus including a map of where people are discussing their experiences, videos of Inspire members participating in our #keepusallsafe public awareness [...]

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Apr 2020By |0 Comments

Continuing Critical Patient-Centric Research Virtually during COVID19

Continuing Critical Patient-Centric Research Virtually during COVID19 By Richard Tsai The COVID-19 pandemic is forcing all kinds of businesses and research institutions to find ways of working that provide results similar to what we’re used to gaining from human social interaction. For example, being mindful of the time healthcare professionals need to dedicate to the pandemic has resulted in tremendous delays in HCP-based market research programs. Many clinical trial sites have temporarily suspended work that not only impacts existing enrolled patients but also greatly reduces recruitment. How can we continue critical research programs amidst these challenges? As [...]

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Mar 2020By |0 Comments

Caregivers and Treatment Decisions

Caregivers and Treatment Decisions By Kathleen Hoffman, PhD, MSPH Besides patients and doctors, who else influences treatment adherence at the consumer level? Marketing might look to one group that has multiple points of influence: Caregivers. Several studies confirm that caregivers are an important factor in a patient’s decisions, including decisions on medication. One study called "The Role of the Family in Treatment Decision Making by Patients With Cancer,” said, “Family opinions have a significant impact on patients’ treatment decisions and psychological well-being....Family care of patients typically involves monitoring patients’ medications.” Another study entitled, “Patient Centered Care: A [...]

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Mar 2020By |0 Comments

Caregivers: An Untapped Resource for Clinical Research

Caregivers: An Untapped Resource for Clinical Research By Hannah Eccard, MA Caregivers provide substantial support to the health and well-being of patients in the US. One of their contributions involves helping patients search for, and participate in, clinical trials. Caregivers turn to Inspire for help finding and accessing clinical trials. My father was diagnosed [date] with stage 4 [type] cancer. He has been on numerous rounds of chemotherapy and last scan showed the cancer has progressed…We are now waiting news of any clinical trial he is eligible for…. He is in stable condition now without any issues... [...]

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Mar 2020By |0 Comments

Merck’s Patient-Centric Clinical Trial Recruiting

Merck’s Patient-Centric Clinical Trial Recruiting By Kathleen Hoffman, PhD MSPH Merck boosts clinical trial recruitment with a patient-centric mindset Everyone in pharma knows that product success depends on the results of clinical trials -- but we don’t usually hear from the people who are involved in running them.  Recently, four Clinical Research Managers (CRM) from Merck (known as MSD outside the United States and Canada) discussed how Merck is overcoming the barriers to clinical trial recruitment by adopting a patient-centric process -- a model that affects their trials top to bottom, from design through implementation. Each of [...]

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Mar 2020By |1 Comment

Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire

Transforming Fear into Hope: Prostate Cancer Treatment Discussions on Inspire By Kathleen Hoffman, PhD MSPH In October 2009, Us TOO Prostate Cancer partnered with Inspire to support men diagnosed with prostate cancer. Now, the Us TOO International Prostate Cancer Support Community on Inspire has over 23,000 members. Last year, almost 500 new discussions started in the area of treatment options, prompting over 5500 new replies. When patients and caregivers started 148 discussions about being newly diagnosed, they received more than 2500 replies from fellow patients, who supported and educated them. Patient and caregiver members often introduce themselves [...]

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Feb 2020By |0 Comments

Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020

Patients Should Inform Clinical Trial Development: Inspire Webinar 1 2020 By Jeff Terkowitz Lesley Gosden, a patient and patient advocate with Parkinson's disease, gave the patient keynote speech opening “Patients As Partners Europe,” held January 27-28.1 She described her experience in the GDNF study, which involved the surgical implantation of a port for infusions of GDNF directly into the brain of Parkinson’s patients, bypassing the blood-brain barrier. Ms. Gosden is one of those who experienced an enormous benefit from the GDNF: prior to her involvement in the trial, she was wheelchair bound. Afterwards, she could walk again. [...]

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Feb 2020By |0 Comments

When It Comes to Clinical Trials, Patient Concerns Differ

When It Comes to Clinical Trials, Patient Concerns Differ By Kathleen Hoffman, PhD, MSPH In 2019, Inspire researched patients and caregivers feelings about, and understanding of, clinical trials. Over 1500 members (1644) participated: Members with arthritis, colorectal cancer, prostate cancer, psoriasis, ovarian cancer, sarcoidosis and scleroderma. The findings show that these groups have different understandings of and concerns about clinical trials. Sixteen percent of the participants had already participated in clinical trials. Another 15 percent had tried to participate in a clinical trial but 1) were not eligible, 2) the clinical trial was full or 3) [...]

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Feb 2020By |0 Comments