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The Killing of Brian Thompson was Awful

The Killing of Brian Thompson was Awful

The news cycle is moving on, but the killing of Brian Thompson was awful, no matter how one feels about the shortcomings of the American health care system. In a recent New York Times opinion piece, Andrew Witty, president of the UnitedHealth Group, wrote that no one...

AI Gives SPM a New Opportunity to Lead

I recently posted an article entitled, “In Cancer, Patient-Empowering AI Begins to Change Care, Relationships,” that contained this declaration, “Good medicine needs to become participatory medicine, not least because involving the patient as a partner consistently...
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...
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...
Improving Cancer Care for BIPOC Women is Everyone’s Cause

Improving Cancer Care for BIPOC Women is Everyone’s Cause

For women of color facing breast cancer diagnoses, making decisions is a precarious balancing act, a process with significant implications across healthcare and society. Diagnosis tends to occur at a younger age (that is, before 40, when many screening programs become...
Playing the Waiting Game While Living with a Rare Disease

Playing the Waiting Game While Living with a Rare Disease

In 2004, at age 17, I was diagnosed with an adult-onset muscle disease called limb-girdle muscular dystrophy type 2B (LGMD2B). My diagnostic journey began 10 months prior, the result of a routine blood test after a car accident which yielded concerning biomarker...
Building a Framework for Authentic Patient Centricity

Building a Framework for Authentic Patient Centricity

As a leader in patient advocacy, I am often asked to speak on the topic of patient centricity and patient advocacy from the biotech/pharma perspective. What do we mean by patient centricity or when we say that patients are at the center of what we do or patients are...

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