Patient-Centered Healthcare Archives

Research reveals interstitial cystitis triggers and frustrations
Patient Communities, Patient Insights, Patient-Centered Healthcare

Research reveals interstitial cystitis triggers and frustrations

Research reveals interstitial cystitis triggers and frustrations The Interstitial Cystitis Association (ICA) estimates that as many as 8 million women and 4 million men in America live with interstitial cystitis, also known as bladder pain syndrome or IC/BPS. Various treatment pathways exist, but they are not guaranteed to work for all individuals that are living with the condition. From the community: “I get lower stomach pain when my bladder is filling up. Urgency as well. I can’t hold on otherwise it’s painful. Very bad stinging and burning when I urinate. I have these symptoms almost every day, [...]

Taking patient market research to the next level with PatientJourney+
Patient Communities, Patient Insights, Patient-Centered Healthcare

Taking patient market research to the next level with PatientJourney+

Taking patient market research to the next level with PatientJourney+ The Inspire community is the largest repository of fully consented patient-created health content on the internet. By participating, Inspire members support one another through their health journeys, and often help to accelerate medical breakthroughs. Posts created within Inspire’s disease-specific communities highlight patient and caregiver needs, concerns, and thought processes. They offer a window into the authentic patient and caregiver perspective for pharmaceutical companies and clinical research organizations, and provide critical guidance for clinical, commercial, and public health initiatives. Many members choose to participate in client sponsored research [...]

Genetic and Cellular Studies Carve New Pathways to Treating Epithelial Ovarian Cancer
Clinical Trials, HEOR, Patient Insights, Patient-Centered Healthcare

Genetic and Cellular Studies Carve New Pathways to Treating Epithelial Ovarian Cancer

Genetic and Cellular Studies Carve New Pathways to Treating Ovarian Cancer By Kathleen Hoffman, PhD, MSPH Ovarian, fallopian tube cancer and primary peritoneal cancer are often grouped under the name epithelial ovarian cancer. When classified as subcategories of ovarian cancer, primary peritoneal cancers and fallopian tube cancers are considered rare. The incidence rate of primary peritoneal cancer is estimated to be 6.78 per million.1 Fallopian tube cancers have been thought to be “very rare,” accounting for 1-2% of all gynecologic cancers.2 Because these cancers are usually advanced by the time they are diagnosed, it has been difficult [...]

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021
Clinical Trials, HEOR, Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021

Cancer, COVID, and Vaccinations: The Patient Perspective at ASCO 2021 By Kathleen Hoffman, PhD, MSPH Inspire is presenting the results of two separate surveys during the American Society of Clinical Oncology® (ASCO) virtual conference being held June 4-8. Chosen from the more than 5,400 abstracts submitted for the 2021 ASCO Annual Meeting, the studies focus on COVID-19 vaccine hesitancy and reactions to the vaccine among patients with cancer. Inspire’s cancer community Inspire has almost one million members who are patients with cancer and their caregivers. In the last 15 years, over three million posts (3,555,105) have been [...]

Promising New Therapies for Treating Atopic Dermatitis
Clinical Trials, HEOR, Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

Promising New Therapies for Treating Atopic Dermatitis

Promising New Therapies for Treating Atopic Dermatitis By Kathleen Hoffman, PhD, MSPH People who do not have atopic dermatitis (AD), also called eczema, can have the simple experience of having an itch relieved by scratching. For people with atopic dermatitis, this is a heavenly fantasy. For AD sufferers, the symptom most of them have in common is areas of skin with unrelenting itching, burning, or otherwise painful discomfort. I am absolutely miserable with eczema on my face. ... I think I have it under control, and then ,bang, there it goes again - the unbearable itching, stinging, [...]

In Search of Answers: Head and Neck Squamous Cell Carcinoma (HNSCC)
Clinical Trials, Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

In Search of Answers: Head and Neck Squamous Cell Carcinoma (HNSCC)

In Search of Answers: Head and Neck Squamous Cell Carcinoma (HNSCC) By Kathleen Hoffman, PhD, MSPH The basic dry facts about Head and Neck Squamous Cell Cancer (HNSCC) are that it is a cancer of the mucosal lining of the oral cavity and larynx; typical treatments include surgical intervention, chemotherapy, radiation, and, more recently, immunotherapy, followed by various kinds of rehabilitation and reconstruction. However, let’s make it real. A member of Inspire’s Head and Neck Cancer Alliance community describing their Survivor Story said: I am [an] oral cancer (Tongue cancer) survivor (my age is ___ years). In [...]

I was diagnosed with Ankylosing Spondylitis at 15
Clinical Trials, Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

I was diagnosed with Ankylosing Spondylitis at 15

I was diagnosed with Ankylosing Spondylitis at 15 By Kathleen Hoffman, PhD, MSPH Imagine a patient with inflammatory joint pain. You’re probably not visualizing a young person in his 20’s or teens with severe lower back pain, but that’s a likely scenario for sufferers of ankylosing spondylitis (AS). One Inspire member said: I was diagnosed with AS at 15 years old ... in my case it took an emergency room visit when I could hardly move and freaked out. I had an amazing House-style emergency room doctor who solved the mystery by ruling out injuries/mechanical problems and [...]

The KRAS Mutation: Cancer Patients Search for Hard-To-Find Trials
Clinical Trials, Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

The KRAS Mutation: Cancer Patients Search for Hard-To-Find Trials

The KRAS Mutation: Cancer Patients Search for Hard-To-Find Trials By Kathleen Hoffman, PhD, MSPH There is new hope for cancer patients with the mutated protein KRAS G12C, an oncogene previously thought to be “undruggable.”1 KRAS is one part of the RAS-RAF cellular signaling pathway that drives a cell to multiply, and its mutations are commonly present in pancreatic, colorectal, and non-small cell lung cancers (NSCLC), all of which have a poor prognosis.2 In 2013, the NIH National Cancer Institute founded the RAS Initiative for exploring approaches for attacking the proteins encoded by mutant forms of RAS genes, [...]

A Burden Shared: Finding Support for Major Depressive Disorder
Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

A Burden Shared: Finding Support for Major Depressive Disorder

A Burden Shared: Finding Support for Major Depressive Disorder By Kathleen Hoffman, PhD, MSPH The CDC reported in March that the number of people in the US experiencing recent symptoms of an anxiety or depressive disorder increased from 36.4% to 41.5% during the pandemic.1 Given the circumstances, this 5% uptick in people reporting mental distress isn’t surprising. What should catch our attention, however, is that over 1/3 of the population described having experiences that qualify as symptomatic of a disorder even before the pandemic. The World Health Organization considers depression a global problem affecting over 264 million [...]

Familial Amyloidosis: “So Rare You’ll Never See Anyone With It”
Patient Communities, Patient Insights, Patient Stories, Patient-Centered Healthcare

Familial Amyloidosis: “So Rare You’ll Never See Anyone With It”

Familial Amyloidosis: "So Rare You’ll Never See Anyone With It" By Kathleen Hoffman, PhD, MSPH Until recently, the only treatments for a rare disease called familial amyloidosis were symptom management or a liver transplant. Not only is the disease inherited, genetic, and rare, its incidence varies widely by region: The NIH says it occurs in about 1 in 583 people in some parts of Portugal, compared to about 1 in 100,000 people in the US. Inspire members say that the path to diagnosis and treatment is long and convoluted: I was diagnosed with familial TTR Amyloidosis about [...]