Caregiving in the Time of COVID

Caregiving in the Time of COVID By Kathleen Hoffman, PhD, MSPH with contributing writer/Inspire member Peigi Chace On Inspire alone, 41,000+ members have written over 19,000 posts about Coronavirus. An Inspire Coronavirus support group has been formed. Real world voice analysis of caregiver posts on Inspire reveal the desperation caregivers have been experiencing during the pandemic. my husband is on a vent in the hospital. I haven’t seen him since the ambulance came and drove off. They can’t get him off vent which, by the way, was introduced to break through blockage in the carotid artery to [...]

Read More

Feb 2021By |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 [...]

Read More

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 [...]

Read More

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 [...]

Read More

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... [...]

Read More

Mar 2020By |0 Comments

Inspire Insights: What You Learn From Caregivers

Inspire Insights: What You Learn From Caregivers By Kathleen Hoffman, PhD MSPH According to the AARP’s 2015 report, “Valuing the Invaluable,” around 18% of adults in the US provide care as unpaid caregivers to family members. Over half of these caregivers are women. 1, 2 Of Inspire’s 1.3 million members, about one-third are caregivers. Yet the number of caregivers in a community truly depends on the medical condition: the rare disease community, Tuberous Sclerosis Alliance Support Community on Inspire, has over 13,000 members, over half of which (53%) are caregivers.  Likewise, the Alzheimer's Foundation of America Support [...]

Read More

May 2018By |0 Comments

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis

Video Vignettes: Through Their Own Eyes: Idiopathic pulmonary fibrosis In patients who have pulmonary fibrosis, the moist, elastic lung tissue starts to thicken and scar making it increasingly difficult for blood to get oxygenated. As scarring builds up over time in this progressive disease, the amount of oxygen getting to the brain and other organs of the body significantly diminishes. Idiopathic pulmonary fibrosis is part of a larger group of illnesses called interstitial lung disease (ILD). Idiopathic pulmonary fibrosis (IPF) is a rare subset of this chronic disease.  Its cause is unknown, though it can run in [...]

Read More

Aug 2017By |3 Comments