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More important than Time and Money

More important than Time and Money

Mortality is a fabric more important than money, politics, and belief systems.  We all share the same responsibility of health; the only variable is the time in our life we acknowledge it. Rare/undiagnosed consumer behavior is the most intense example of participatory...
Team Building In The Wake of the COVID-19 Pandemic

Team Building In The Wake of the COVID-19 Pandemic

Editor’s note: In her new book, Communicating Through a Pandemic: A Chronicle of Experiences, Lessons Learned, and a Vision for the Future, Amelia Burke-Garcia, PhD, MA explores the many and varied roles that communication has played over the course of this pandemic,...
Building for Success: How Good Clinicians Can Empower Patients

Building for Success: How Good Clinicians Can Empower Patients

Editor’s note: Ibrahim Rashid contracted Long COVID more than two years ago. The experience is propelling his patient advocacy and entrepreneurship, as co-founder of the digital health company Strong Haulers. In this excerpt from his new book, Strong Hauler: Learning...
The Power of the Prescription Pad

The Power of the Prescription Pad

At some point in our lives, we’ll be handed a little sheet of paper from our physician that has scribbled on it the medication we need, how much of it, and how often we should take it. These little slips of paper are power. They tell us that in order to get better, we...
How All of Us in Healthcare Can Close the Empathy Gap

How All of Us in Healthcare Can Close the Empathy Gap

I recently saw The Color of Care, a documentary highlighting the disparate and inequitable care received by Black and Brown individuals during the COVID-19 pandemic. During the movie, Executive Producer Oprah Winfrey opined that one of the primary issues with...
Expert Advisory Boards: A New Model for Co-Exploration

Expert Advisory Boards: A New Model for Co-Exploration

A few years ago I learned that non-profit organizations MUST have a Scientific or Medical Advisory Board in order to be listed on NIH’s website as an informational resource for patients. Likewise, many foundation grants require a non-profit to have a similar...
A Citizen’s Response Corps for Digital Health

A Citizen’s Response Corps for Digital Health

Editor’s note: In his new book, The Long Haul – Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever, journalist and patient Ryan Prior depicts the courage of patients with Long COVID who were the first to name,...
Building Us Up, Not Tearing Us Down

Building Us Up, Not Tearing Us Down

“Lack of effort and persistence”  Those words cut like a knife, leaving a deeper wound than any facet of illness my daughter has faced. A provider used those words to describe my 19-year-old daughter Sara, who has lived her entire life with chronic complex medical...
Dr. Danny Sands: Participatory Medicine Can Cure Many Ills

Dr. Danny Sands: Participatory Medicine Can Cure Many Ills

Embracing shared decision making in medicine will improve patient outcomes, reduce costs, increase health equity, and even help alleviate clinician burnout, Danny Sands, MD, co-founder of the Society for Participatory Medicine, said in a recent podcast interview. Erin...
Patients and the Diagnostic Journey: Finding Specialists

Patients and the Diagnostic Journey: Finding Specialists

The journey to diagnosis for patients, particularly those living with complex health conditions remains challenging for patients, their loved ones, and their physicians. As frontline experts on the diseases and conditions affecting their lives, patients and family...
The Keys to Good Relationships With Your Care Teams

The Keys to Good Relationships With Your Care Teams

Being born with cystic fibrosis, a progressive, genetic lung disease, I have had countless health encounters throughout my life. Through these experiences I have learned the power that lies in self advocating for my health in the clinic setting with my doctors and...
Turning Pain into Power through Advocacy

Turning Pain into Power through Advocacy

When I heard the words, “You have Lupus,” I didn’t know the magnitude of how much my life was going to be tested. It started in 1980 when rashes and unexplained fevers plagued my life. Seeing doctors about my symptoms led to solutions that were only temporary. Fifteen...
Tell Me Your Story: How Narrative Medicine Fosters Trust

Tell Me Your Story: How Narrative Medicine Fosters Trust

Curled up on her hospital gurney but unable to sleep, the middle-aged Latinx female trauma patient sighed, “I am tired of being tired.” Before daybreak, “Rosa” (not her real name) had arrived at work to open her New York restaurant but was interrupted by an intruder...
Simple Measures to Put Caring Back in Health Care

Simple Measures to Put Caring Back in Health Care

Editor’s note: When oncology and hospice nurse Theresa Brown was diagnosed with breast cancer, she couldn’t believe how disorganized and unempathic her care was. Ultimately she called it D.I.Y. care, as in Do-It-Yourself: figure out the treatment process, find the...

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