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The Keys to Good Relationships With Your Care Teams

The Keys to Good Relationships With Your Care Teams

by | Aug 23, 2022

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...
Participatory Medicine is Where You Find It

Participatory Medicine is Where You Find It

by | Aug 17, 2022

Collaborations across healthcare can save lives – especially when working with patient advocates. For a person like me, who is impacted by a rare, neurological, and incurable disease, it’s my mission to ensure that patients’ perspectives are represented  early...
Turning Pain into Power through Advocacy

Turning Pain into Power through Advocacy

by | Jul 12, 2022

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...
Creating Your Own Self-Advocacy Style

Creating Your Own Self-Advocacy Style

by | May 5, 2022

We cannot always choose what happens to us in life, but we can choose how we respond and handle it. Take for example, the time that I had a physical examination with my relatively new primary care physician. They did blood work and I received a report, along with a...
Tell Me Your Story: How Narrative Medicine Fosters Trust

Tell Me Your Story: How Narrative Medicine Fosters Trust

by | Apr 27, 2022

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

by | Apr 20, 2022

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

by | Apr 13, 2022

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...
How Reception Areas can Open Doors to Better Health

How Reception Areas can Open Doors to Better Health

by | Mar 7, 2022

Editor’s note: Moyez Jiwa, MD, founder of The Journal of Health Design, and The Health Design Podcast, believes that we can improve outcomes for patients as soon as  today by simply paying attention to the small details that needlessly undermine those outcomes. In...
Playing the Waiting Game While Living with a Rare Disease

Playing the Waiting Game While Living with a Rare Disease

by | Mar 1, 2022

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...
Getting “unstuck” after a life-changing medical diagnosis

Getting “unstuck” after a life-changing medical diagnosis

by | Feb 3, 2022

Editor’s note: Annie Brewster, MD, founder of Health Story Collaborative, and a friend to the Society for Participatory Medicine, has just published “The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma, and Loss.” In this excerpt...
Building a Framework for Authentic Patient Centricity

Building a Framework for Authentic Patient Centricity

by | Jan 11, 2022

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...
Healthcare as a Meeting of Two Experts

Healthcare as a Meeting of Two Experts

by | Dec 20, 2021

When I was training to become a clinical psychologist, my supervisors gave me several pieces of great advice. One told me that the psychologist or therapist is the expert on mental health treatment and research but the patient or client is the expert on their own...
Linnea Olson: An Appreciation of a Giant

Linnea Olson: An Appreciation of a Giant

by | Dec 15, 2021

Pioneers of medical progress are lauded in published articles and by their professional peers. But it is often the patient advocates, particularly those who demanded better treatment, spearheaded clinical trial advances, and bravely took on institutions and standards...

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