Society for Participatory Medicine
Journal of Participatory Medicine
Perspective
Narratives, Vol. 5, 2013
Steel Standing: Metal Meets Muscle; A Patient’s Perspective
A family caregiver tells how she helped solve the mystery of her mother’s debilitating condition by persistently seeking out published studies and, on the fourth try, finding a surgeon who would listen to the patient and her advocate.
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e-Patients in Twitter Hashtag Communities
There’s promising evidence that Twitter hashtag communities are a force for improvement in medicine — a force largely driven by patients.
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Metastatic Breast Cancer: Lessons Learned from My Missed Diagnosis
A woman with terminal metastatic breast cancer shares her story, a cautionary tale about medical mistakes, basic communication failures of clinicians, and her naive faith in a “world class academic health system.”
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Evolving from Patient Zero to Dr. House
I was a “patient zero” — not as the term is used in infectious disease outbreaks — but as in describing my level of knowledge entering a mini-med school class where I had to navigate the maze of medical websites to find information that I could understand and trust.
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Me, Myself, & the MRI
The author, using a pseudonym, shares the story of her nerve-wracking cancer screening experience that turned hopeful thanks to a participatory radiologist.
Read MoreNarratives, Vol. 4, 2012
One Clinician’s Awakening
I am a nurse. I am a patient. I was sure about which role made me strong and which one made me weak. Which was helpful to others and which was a burden. Then an email arrived in my inbox that would turn all those beliefs upside down.
Read MoreNarratives, Vol. 4, 2012
Listen, Dream, and Change: Using the Power of Patients to Improve Care
We need to make our care more patient-centered. The author illustrates with some examples from his daily practice that we should use the power of patients to achieve the necessary changes. Listening and dreaming appear to be important catalysts.
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Using Self-Coaching to Improve Life with Fibromyalgia
The author discusses her use of psychological self-coaching techniques to maintain optimum health and functioning while living with fibromyalgia syndrome.
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Can We Just Choose to Live?
The author describes how, for herself and other cancer survivors, “choosing to live” provides a pathway to survival, and supporting fellow patients/survivors enhances their own wellbeing.
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An Introduction to Self-Care
After a very positive family experience with collaborative care, the author was emboldened to modify her communication with her psychiatric patients in ways that enable them to engage more effectively in their care.
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A Resident’s View: Eliminating Skin Cancer — Choose Your Own Adventure
Engaging in discussions about the management of benign and complex skin lesions with my patients has taught me more than any reading from the dozens of textbooks or hundreds of articles that laid the foundation for my medical education.
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Present, Patient, and Accounted For: How and Why Patients Are Present at Scientific Meetings of the American College of Rheumatology
The author describes how an organization for e-patients with rheumatoid arthritis (RA) evolved to win recognition within the scientific community as an authority on RA patient needs and patient care.
Read MoreNarratives, Vol. 4, 2012
Waiting Room Remedy: Doctor Pays for Delays (The Doctor’s Perspective)
The author, a physician, tackles the problem of long wait times at doctors’ offices, offering a solution that shows respect for patients while urging both parties to take responsibility.
Read MoreNarratives, Vol. 3, 2011
The Patient Will See You Now
Pressure that physicians feel to maintain a good business model threatens to overlook a critical part of our “product.” In health care, the patient’s story and the relationship have ironically become the obstacle, rather than the objective.
Read MoreNarratives, Vol. 3, 2011
Three Sisters, One Voice
This is the story of a family in crisis and how a unique model of participatory medicine enabled three sisters (two patients and their advocate) to achieve vastly improved medical management of a congenital brain disease and comorbid conditions.
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More Support and Information Needed for Getting off Psych Drugs
Concerned about the long-term dangers of psychiatric drugs, the author decided to discontinue his antidepressant. He discovered that it is very common for people to run into numerous problems when trying to discontinue psych drugs. Very little information, assistance, or support is available for doing this.
Read MoreNarratives, Vol. 3, 2011
A Resident’s View: What Does It Mean for a Resident Physician to Be Participatory?
On the backdrop of an amazingly intense work environment is thrust a new movement, led by patients and providers alike, asking simply, “How we can do better through participatory medicine?”
Read MoreNarratives, Vol. 3, 2011
Women’s Wellness Guide Kiosks: Empowering Women to Take Charge of Their Health
The Women’s Wellness Guide is a program that uses computerized kiosks in public places to deliver relevant, understandable information on a variety of women’s health topics. It reaches out to women who are often overlooked by the health care system: Those without the time, money, or other resources to access doctors and other sources of medical information.
Read MoreNarratives, Vol. 3, 2011
A Breath of Hope for LAM Patients: The Relentless Pursuit to Defy the Odds
The author explores the participatory approach of LAM Foundation, which was founded to support patients and spearhead research into a rare illness. The Founation’s achievements were recognized in a recent issue of The New England Journal of Medicine (NEJM) which also included a research article about the first oral drug treatment for LAM.
Read MoreNarratives, Vol. 3, 2011
Empowered Patient — Empowered Lifestyle
The author relates how she deals with bipolar disorder, in particular side-effects of medication such as weight gain and lowered self-esteem. At the core of her strategy is a collaborative approach to seeking help from psychiatrists and psychotherapists.
Read More
Hacking Health: Designing for and Understanding My Health
Participatory Medicine: Opportunities and Threats
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