The Life Changing Diagnosis of Inflammatory Bowel Disease

The Life Changing Diagnosis of Inflammatory Bowel Disease By Kathleen Hoffman, PhD MSPH ​​ I've had UC for 4 years also. Diagnosed with a colonoscopy after 5 months of diarrhea, losing 1/3rd of my otherwise normal weight and enough blood to require a 2-pint transfusion. Pausing a conversation to use the restroom is biologically necessary, but can be socially awkward. People living with inflammatory bowel diseases (IBD) find themselves saying “Excuse me” many more times a day than they would like and experience pain with symptoms nobody enjoys talking about. The two most common inflammatory bowel diseases [...]

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice

Patients Enroll In Studies When They Have a Voice: Real World Study Succeeds with Patient Voice By Kathleen Hoffman, PhD, MSPH The most persistent hurdle in running a clinical trial is recruiting and keeping participants. More recently, the FDA added the expectation that the value of released drugs be supported with Real World Evidence (RWE). A recently-conducted multi-center prospective observational study accomplished both by using patients as partners throughout clinical design. The PROP-UP study was a designed to collect real world patient centered data on the harms and benefits of the new, highly effective, direct-acting antiviral [...]

Exploring Treatment Options with Others Online: Crohn’s Disease and Ulcerative Colitis

Exploring Treatment Options with Others Online: Crohn’s Disease and Ulcerative Colitis By Kathleen Hoffman, PhD MSPH According to the CDC, in 2015, an estimated 1.3 percent of US adults (3 million) reported being diagnosed with irritable bowel diseases (IBD): either Crohn's disease or ulcerative colitis.1 There are 70,000 new cases diagnosed every year.2 These immune-mediated diseases can cause destructive inflammation and can permanently harm the intestines. Symptoms can include diarrhea with fever, abdominal pain and cramping and fatigue among others.3 Every patient’s symptoms vary in type, severity, and frequency, so Inspire members go online to discuss their [...]

Real World Voice Allows Patients to be Part of the Cure

Real World Voice Allows Patients to be Part of the Cure By Claire Harter “The patient wants to be a partner in cure, just as with their doctors they want to be a partner in care.” - John Linnell, COPD Patient Advocate, talking about health literacy, eyeforpharma virtual conference, 4/14/2020 Where and how can patients partner with pharma for a cure? Where can pharma go to learn from patients about the patient experience? One resource is Electronic health records (EHRs). As a resource, they provide critical information about patient diagnosis and treatment. But, EHRs reflect the [...]

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 [...]

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 [...]

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 [...]

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. [...]

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) [...]

Motivating change through online patient sharing

Motivating change through online patient sharing By Kathleen Hoffman, PhD MSPH Humans evolved as storytellers. Experiences of the weather, nature, life, and the world have been explained through legends and myths. Sharing stories continues to build and maintain community. As Marie Ennis O’Connor, Irish breast cancer survivor, blogger and marketing consultant states, patients’ stories are authentic and genuine “windows into the lived experience,”1 or as linguists would argue, their stories are rich sources of “real world evidence.” Breast cancer patients have been sharing their stories online for many years now. On July 4, 2011, the #BCSM (for [...]