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e-Patients Blog

Our blog highlights items of interest to those in the world of e-patients and participatory medicine. Some of our most popular topics include e-patient stories, e-patient resources, problems in healthcare, medical records, news & gossip, patient networks, policy issues, positive patterns, patient/doctor co-care, patients as teachers, reforming healthcare, trends & principles, and why participatory medicine. Our newest blog posts are below. You can also subscribe to our blog via email.

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...

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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...

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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...

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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...

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Participatory Medicine is Where You Find It

Participatory Medicine is Where You Find It

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 and...

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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...

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Collaborative Notes, Engaged Partners, Fewer Errors

Collaborative Notes, Engaged Partners, Fewer Errors

Patients, care partners & clinicians can reduce record errors with collaborative notes. Dr. Peter Elias shares his note-writing with collaborative partners. Proem Expecting an error-free medical record seems unreasonable – too many opportunities, too many forces,...

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Creating Your Own Self-Advocacy Style

Creating Your Own Self-Advocacy Style

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...

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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...

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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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