April 30th, 2011 by DavedeBronkart in True Stories
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Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.”
A new article in our Journal of Participatory Medicine provides a compelling example: A Physician’s Experience as a Cancer of the Neck Patient: The Importance of Patient Participation. The author, Itzhak Brook MD, makes our point:
I am telling my personal story in the hope that health care providers will realize the difficult challenges faced by a patient diagnosed with cancer and undergoing extensive surgeries. I am also discussing the importance of active participation of the patient and their family members in all phases of care.
JoPM co-editor Charlie Smith adds, in his introductory note: (emphasis added)
You may wonder why a physician’s account of his illness and the frustrations he experienced merit publication in this journal. But, if a doctor has this degree of anxiety, this much difficulty getting information about his care and this degree of struggle making good decisions, then patients can easily understand why they feel so overwhelmed and incapable, at times, of truly “participating” in their own care. What we are advocating for is difficult in the best of circumstances and requires all hands on deck for the task! Read more »
*This blog post was originally published at e-Patients.net*
March 9th, 2011 by LouiseHBatzPatientSafetyFoundation in Health Policy, True Stories
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This is a guest post by Dr. Julia Hallisy.
Serious infections are becoming more prevalent and more virulent both in our hospitals and in our communities. The numbers are staggering: 1.7 million people will suffer from a hospital-acquired infections each year and almost 100,000 will die as a result.
When our late daughter, Kate, was diagnosed with an aggressive eye cancer in 1989 at five months of age, our life became consumed by doctor visits, MRI scans, radiation treatments, chemotherapy — and fear. My husband and I assumed that our fight was against the ravages of cancer, but almost eight years later we faced another life-threatening challenge we never counted on — a hospital-acquired infection. In 1997, Kate was infected with methicillin-resistant staphylococcus aureus (MRSA) in the operating room during a “routine” 30-minute biopsy procedure to confirm the reoccurrence of her cancer.
Kate’s hospital-acquired infection led to seven weeks in the pediatric intensive care unit on life support, the amputation of her right leg, kidney damage, and the loss of 70 percent of her lung capacity. While most infections are not this serious, the ones that are often lead to permanent loss of function and lifelong disabilities. In the years since Kate’s infection, resistant strains of the bacteria have emerged and now pose even more of a threat since they can be impossible to treat with our existing arsenal of antibiotics.
Patients afflicted with MRSA will often have to contend with the threat of recurrent infections for the rest of their lives. These patients live in constant fear of re-infection and often struggle with feelings of vulnerability and helplessness. Family members, friends, and co-workers may not fully understand the facts and have nowhere to turn for education about risks and prevention. Loved ones may worry unnecessarily for their own safety, which can cause them to distance themselves from someone who desperately needs their presence and support.
We have the knowledge and the ability to prevent a great number of these frightening infections, but the busy and fragmented system in which healthcare is delivered doesn’t encourage adequate infection control measures, and patients continue to be at risk. A significant part of the problem is that the public doesn’t receive timely and accurate information about the detection and prevention of MRSA and other dangerous organisms, and they aren’t engaged as “safety partners” in the quest to eliminate infections. Read more »
January 21st, 2011 by DavedeBronkart in Health Tips, Opinion
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There are several stages in becoming an empowered, engaged, activated patient — a capable, responsible partner in getting good care for yourself, your family, whoever you’re caring for. One ingredient is to know what to expect, so you can tell when things seem right and when they don’t.
Researching a project today, I came across an article* published in 2006: “Key Learning from the Dana-Farber Cancer Institute’s 10-Year Patient Safety Journey.” This table shows the attitude you’ll find in an organization that has realized the challenges of medicine and is dealing with them realistically:
“Errors are everywhere.” “Great care in a high-risk environment.” What kind of attitude is that? It’s accurate.
This work began after the death of Boston Globe health columnist Betsy Lehman. Long-time Bostonians will recall that she was killed in 1994 by an accidental overdose of chemo at Dana-Farber. It shocked us to realize that a savvy patient like her, in one of the best places in the world, could be killed by such an accident. But she was.
Five years later the Institute of Medicine’s report “To Err is Human” documented that such errors are in fact common — 44,000 to 98,000 a year. It hasn’t gotten better: Last November the U.S. Inspector General released new findings that 15,000 Medicare patients are killed in U.S. hospitals every month. That’s one every three minutes. Read more »
*This blog post was originally published at e-Patients.net*
December 31st, 2010 by DavedeBronkart in Better Health Network, Health Tips, Research
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This is the first of the follow-up posts I hope to write from participating in the Salzburg Global Seminar titled “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.”
One of our purposes on this site is to help people develop e-patient skills, so they can be more effectively engaged in their care. One aspect is shared decision making, which we wrote about in September. A related topic, from August, is understanding the challenges of pathology and diagnosis. Both posts teach about being better informed partners for our healthcare professionals.
I’ve recently learned of an another topic, which I’m sure many of you know: Practice variation. This is a big subject, and I’ll have several posts about it. It’s complex, the evidence about it is overwhelming, and its cost is truly enormous. Read more »
*This blog post was originally published at e-Patients.net*
December 5th, 2010 by DavedeBronkart in Better Health Network, Health Policy, Health Tips, News, Opinion, Research
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A year ago Gangadhar Sulkunte shared his story here about how he and his wife became e-patients of necessity, and succeeded, resolving a significant issue through empowered, engaged research. As today’s guest post shows, he’s now actively engaged in thinking about healthcare at the level of national policy, as well – and he calls for all patients to speak up about this new issue. – Dave
I recently came across a Pauline Chen piece in the New York Times, “Listening to Patients Living With Illness.” It refers to a paper by Dr. Wu et al, “Adding The Patient Perspective To Comparative Effectiveness Research.” According to the paper and the NY Times article, Dr. Wu and his co-authors propose:
- Making patient-reported outcomes a more routine part of clinical studies and practice and administrative data collection.
- In some cases requiring the information for reimbursement.
Patient-Centered Outcomes is outcomes from medical care that are important to patients. The medical community/research focuses on the standard metrics related to survival and physiological outcomes (how well is the part of the body being treated?). In the patient-centered outcomes research, they will also focus on outcomes important to patients such as quality of life. In other words, the care experience will be viewed through the eyes of the patients and their support groups to ensure that their concerns are also addressed. Read more »
*This blog post was originally published at e-Patients.net*
Two years ago we wrote “Let’s hear it for the ‘d-patients’” — doctors who become e-patients themselves. We said “D-patients prove that patient empowerment is anything but anti-doctor. Heck, sometimes it’s a doctor preservation movement.”
