About Kathleen Hoffman, PhD

Kathleen Hoffman, PhD, MSPH is Senior Health Research and Writer at Inspire. She is a communications professional, social scientist and writer who develops evidence-based communications focused on the human side of healthcare. Her research background includes experimental studies in communication, persuasion, health communication and the media and qualitative research focused on content analysis, frame analysis and ethnography. As a professional writer and communicator of nearly two decades, Kathleen is a leader in the patient empowerment movement. Kathleen earned her PhD in Communications from the University of Alabama, preceded by a master’s degree in Television and Film from Syracuse University and a master’s degree in Public Health at UNC-Chapel Hill. She is also a two-time fellow of Healthcare Communication at Harvard University’s School of Public Health. Kathleen lives near Boston with her husband and son.
Senior Health Researcher and Writer

Respecting privacy matters

Respecting privacy matters By Kathleen Hoffman, PhD, MSPH In May, the HealthcareNOW radio program “Harlow on Healthcare” featured Inspire’s founder and CEO, Brian Loew speaking with David Harlow, host and health care law consultant. In the interview, Loew describes Inspire’s patient and caregiver members as a “rich and largely underutilized sources of expertise” about disease conditions and treatments, including medications. Access to this wealth of information requires profound respect for those owning it. “The Inspire community was created to meet the need people have to find information about their conditions from other people living with the [...]

Referring patients to clinical trials is personal, study shows

Referring patients to clinical trials is personal, study shows By Kathleen Hoffman, PhD MSPH Why is it so hard to get physicians to refer patients to clinical trials?  One cynical assumption is that physicians are afraid they’ll lose that patient’s business.  Not so, according to a Tufts Center for the Study of Drug Development survey.1 Doctors are confident about and familiar with the clinical trial process. The survey of over 750 physicians found a high degree of comfort with clinical trials; almost 90 percent said they were comfortable providing and discussing clinical trial opportunities with patients. Yet [...]

Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases

Video Vignettes: Through Their Own Eyes: Rare Autoimmune Liver Diseases By Kathleen Hoffman, PhD, MSPH The liver has been called a forgiving organ because of its capacity to regenerate. However, chronic unrelenting damage over years can overwhelm its regenerative abilities, resulting in permanent scarring. Well-known risk factors-being overweight, alcohol abuse, viral infections like Hepatits-C--make cirrhosis of the liver the seventh leading cause of death in the US, affecting an estimated 1 in 400 adults. 1 Yet, a small number of cirrhosis cases are caused by three rare autoimmune diseases,  autoimmune hepatitis (AIH), primary biliary cholangitis (PBC) and [...]

On being a medical hero in the era of social media: Discussing clinical trial participation online

On being a medical hero in the era of social media: Discussing clinical trial participation online By Kathleen Hoffman, PhD “Garrett’s Hero Run” is not the name of a New York Times Bestseller or an up-and-coming blockbuster movie - though it could be. At the moment, it’s the name of a series of races held every year in a small town in Tennessee. A fundraiser name that is poignantly metaphorical. Everyone comes dressed as their favorite superhero and they run the races. But the name is also emblematic of urgency because this is a race against a [...]

Understanding information needs during the patient journey: ovarian cancer

Understanding information needs during the patient journey: ovarian cancer By Kathleen Hoffman, PhD While patients see physicians as the primary and most trusted information resource, research indicates that patients with cancer also seek information elsewhere. Reasons for investigating further include 1) verification or double checking, 2) clarifying what they have learned and even obtaining translations of what they have heard from other patients who have “been there,” 3) being directed by one source to query another source1 and for those who reach out to other patients 4) trust and desire for real world experience in managing expectations. [...]

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s position paper from 2017 clearly describes the dilemma faced in rare disease research. Lab measures and organ size don’t speak to what patients with rare diseases experience, need or value. This focus on measures that are not meaningful impacts the development of rare disease treatments [...]

Rethinking patient engagement in clinical trials: Be part of the solution

Rethinking patient engagement in clinical trials: Be part of the solution By Kathleen D. Hoffman, PhD Seated in the waiting room of a large medical center, I overheard the bright eyed, young man behind the reception desk ask a new patient, “Would you like to learn more about participating in our research?” I smiled and thought, this is part of the solution. But it is a small part. I’ve been going to the same clinic for five years and today is the first time I’ve heard this question. I wondered if anyone would ask me - [...]

First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member

First Breast Cancer “Durable Regression” with Immunotherapy: Judy Perkins, Inspire member By Kathleen Hoffman, PhD MSPH On June 4, 2015, Holly Kitchen, a young mom with metastatic breast cancer, published a video that received over 46 million views in one week. Its message? “Metastatic breast cancer has no cure.”1 Exactly three years to the day, the National Institutes of Health announced that someone with metastatic breast cancer has been cured.2 Here’s her story. Judy Perkins joined the Advanced Breast Cancer Support Community on Inspire in August 2013, shortly after her diagnosis with metastatic breast cancer. But her [...]

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 [...]

Video Vignettes: Through Their Own Eyes: Ovarian Cancer

Video Vignettes: Through Their Own Eyes: Ovarian Cancer Members of the Ovarian Cancer Support Community on Inspire often refer to each other as “Teal Sisters*.” It's a term of solidarity and camaraderie as they face their condition together. Their posts reflect and express warmth, concern, understanding and an eagerness to help. Below we share a video by a Teal Sister describing her experience with ovarian cancer and the Ovarian Cancer Support Community on Inspire. Getting advice The best advice comes from people who have been through the experience before.  Members of this community are open [...]