June 10th, 2011 by DavedeBronkart in Opinion, Patient Interviews
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Ten days ago a post here mentioned the 14th ICSI / IHI Colloquium. I said the Society for Participatory Medicine was well represented, including:
- Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)
Jessie’s talk was so good it had me going nuts on Twitter – I couldn’t keep up with all the “tweet-worthy” things that came out of her mouth.
Well, I’ve just re-read her text, and it brought back why I went nuts. I was going to write about it, but I’m just going to post the full text.
For those who don’t know, last fall Jessie underwent surgery for her fourth cancer; she has some experience. Read more »
*This blog post was originally published at e-Patients.net*
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 »
February 24th, 2011 by Dr. Val Jones in Book Reviews, Opinion
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This was the Guest Blog at Scientific American on February 23rd, 2011.
In his new book, “Tabloid Medicine: How The Internet Is Being Used to Hijack Medical Science for Fear and Profit,” Robert Goldberg, PhD, explains why the Internet is a double-edged sword when it comes to health information. On the one hand, the Web can empower people with quality medical information that can help them make informed decisions. On the other hand, the Web is an unfiltered breeding ground for urban legends, fear-mongering and snake oil salesmen.
Goldberg uses case studies to expose the sinister side of health misinformation. Perhaps the most compelling example of a medical “manufactroversy” (defined as a manufactured controversy that is motivated by profit or extreme ideology to intentionally create public confusion about an issue that is not in dispute) is the anti-vaccine movement. Thanks to the efforts of corrupt scientists, personal injury lawyers, self-proclaimed medical experts, and Hollywood starlets, a false link between vaccines and autism has been promoted on a global scale via the Internet. The resulting panic, legal feeding frenzy, money-making alternative medicine sales, and reduction in childhood vaccination rates (causing countless preventable deaths), are sickening and tragic.
As Goldberg continues to explore the hyperbole behind specific “health threats,” a fascinating pattern emerges. Behind the most powerful manufactroversies, lies a predictable formula: First, a new problem is generated by redefining terminology. For example, an autism “epidemic” suddenly exists when a wide range of childhood mental health diagnoses are all reclassified as part of an autism spectrum. The reclassification creates the appearance of a surge in autism cases, and that sets the stage for cause-seeking.
Second, “instant experts” immediately proclaim that they have special insight into the cause. They enjoy the authority and attention that their unique “expertise” brings them and begin to position themselves as a “little guy” crusader against injustice. They also are likely to spin conspiracy theories about government cover-ups or pharmaceutical malfeasance to make their case more appealing to the media. In many cases the experts have a financial incentive in promoting their point of view (they sell treatments or promote their books, for example).
Third, because mainstream media craves David and Goliath stories and always wants to be the first to break news, they often report the information without thorough fact-checking. This results in the phenomenon of “Tabloid Medicine.” Read more »
February 2nd, 2011 by Mary Knudson in Health Tips, Opinion
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I confess to loving Campbell’s tomato bisque soup. I mix it with 1 percent-fat milk and it’s hot and delicious and comforting, but one of the worst food choices I could make because one cup contains more sodium than I should have in a day. Knowing this, I have already relegated it to an occasional treat. But by the end of this blog post I will do more.
We are overdosing on sodium and it is killing us. We need to cut the sodium we eat daily by more than half. The guidelines keep coming. The U.S. government has handed out dietary guidelines telling Americans who are over 50, all African Americans, people with high blood pressure, diabetes, or chronic kidney disease to have no more than 1,500 milligrams (mg) — or two thirds of a teaspoon — of sodium daily. That’s the majority of us — 69 percent. Five years ago the government said that this group would benefit from the lower sodium and now it made this its recommendation. The other 31 percent of the country can have up to 2,300 mg a day, say the guidelines from the U.S. Department of Agriculture (USDA) and the U.S. Department of Health and Human Services (HHS).
Or should they? The American Heart Association (AHA) recommends that all Americans lower sodium to less than 1,500 mg a day. Excessive sodium, mostly found in salt, is bad for us because it causes high blood pressure which often leads to heart disease, stroke, and kidney disease and can also cause gastric problems. People with heart failure are taught to restrict salt because water follows salt into the blood and causes swelling of the ankles, legs, and abdomen and lung congestion that makes it difficult to breathe.
I saw one recommendation by an individual on the Internet to just drink a lot of water to flush the sodium out of your body rather than worry about eating foods that have less sodium. BAD idea, especially for people with heart problems who need to restrict fluids to help prevent fluid accumulation in their bodies. The salt will draw the water to it.
But cutting our salt consumption by half is quite a tall order for an individual consumer because Americans have been conditioned from childhood to love salt and we on average consume 3,436 mg — nearly one and a half teaspoons — a day. Sodium is pervasive in our food supply. We get most of our sodium from processed foods and restaurant and takeout food, sometime in unexpected places. Read more »
*This blog post was originally published at HeartSense*
Well, I’ve just re-read her text, and it brought back why I went nuts. I was going to write about it, but I’m just going to post the full text.
