March 11th, 2011 by DavedeBronkart in Research, True Stories
Tags: Dave deBronkart, e-Patient Dave, e-Patients.net, Empowered Patients, Health Information on the Web, Internet Geologist, National Public Radio, NPR, Online Health Conversations, Online Patient Communities, Online Support Groups, Pat Furlong, Patient Networks, Patient Stories, Patients On The Internet, Peer-To-Peer Healthcare, Pew Internet & American Life Project, Social Networking For Patients, Society for Participatory Medicine, Susannah Fox, Talk of the Nation
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[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
It’s a good combination: Pat speaks from the heart about her own experience and her passion for community, and Susannah, as usual, speaks as an “internet geologist” — as she once put it, “A geologist doesn’t have opinions about the rocks, she just observes and describes them.” Susannah spoke about her newly-released report “Peer-To-Peer Healthcare,” about which she recently wrote here.
Listener comments begin around 13:00. Examples:
— A woman describes how she started a Facebook group for her painful chronic condition (ankylosing spondylitis) and it’s grown into a website, HurtingButHelpful.org. (Spoonies, take note!) What drove her to create a patient community? “There’s no one else who can understand what I’m talking about.”
— The mother of a newborn with a heart defect found similar parents online. Hearing their stories — and even seeing an upsetting photo — helped her prepare for the surgery.
— On the downside, the daughter of an ovarian cancer patient said her now-cured mom keeps going online to patient communities and getting scared by what she reads. (Host Neal Conan’s observation: “There other parts of the computer that can be addictive, and I guess this one can, too.”)
It’s heartening to hear coverage of online patient communities, including the risks and challenges, in a respected outlet like NPR. (Time covered it, too, a year ago.) And there’s no equal for the reality check of Pew’s data. Some patient activists suggest (and some people fear) that the Internet “frees” patients from doctors, but Pew says that’s not what people are doing. Read more »
*This blog post was originally published at e-Patients.net*
March 9th, 2011 by AndrewSchorr in Better Health Network, Research, True Stories
Tags: Andrew Schorr, Autoimmune Disease, Clinical Trials, Drug Companies, EGID, Eosinophilic Gastroenteritis, Gastroenterology, House MD, Magic Bullet, New Medications, New Treatments, Niche Science, Oncology, Pancreatic Cancer, Patient Power, Pharma Scientists, Pharmaceutical Industry, Pharmaceutical Research, Science and Medicine, Targeted Medicine
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Maybe you read the other day in The New York Times that the pharmaceutical industry has a problem. Big blockbuster drugs like Lipitor are going off patent and the industry leaders don’t have new blockbusters showing promise to replace them. So the big companies search for little companies with new discoveries and they consider buying them. Industry observers think the days of $5 billion-a-year drugs to lower cholesterol or control diabetes may be past for awhile, and the companies will have smaller hits with new compounds for autoimmune conditions and cancer.
When I saw my oncologist for a checkup yesterday — the news was good — we chatted about the article and the trend toward “niche science.” We welcomed it. We didn’t think — from our perspective — the world needed yet another drug to lower cholesterol. We need unique products to fight illnesses that remain daunting, some where there are no effective drugs at all. For example, my daughter has suffered for years from what seems to be an autoimmune condition called eosinophilic gastroenteritis (EGID). Her stomach gets inflamed with her own eosinophil cells. They would normally be marshaled to fight a parasite in her GI tract but in this case, there’s nothing to attack. So the cells make trouble on the lining of the stomach and cause pain and scarring. Right now, there’s no “magic bullet” to turn off these cells. My hope is some pharma scientists will come up with something to fill this unmet need.
In the waiting room before I saw my doctor at the cancer center in Seattle I overheard a woman on the phone speaking about her husband’s new diagnosis of pancreatic cancer. I was sitting at a patient education computer station nearby. When she was finished I introduced myself and showed her some webpages to give her education and hope: pancan.org and our Patient Power programs about the disease. She was grateful. I did tell her — and she already knew — that there was no miracle drug for pancreatic cancer and that it was a usually-fatal condition. But that there were exceptions and, hopefully, her husband would be one. Of course, wouldn’t an effective medicine be best? Read more »
*This blog post was originally published at Andrew's Blog*
March 9th, 2011 by LouiseHBatzPatientSafetyFoundation in Health Policy, True Stories
Tags: Dr. Julia Hallisy, Hospital-Acquired Infections, Infection Control, Infectious Diseases, Institute of Medicine, IOM, Louise H. Batz Patient Safety Foundation, Medical Errors, Methicillin-Resistant Staphylcoccal Auerus, MRSA, Participatory Medicine, Patient Advocacy, Patient Education, Patient Empowerment, Patient Involvement, Patient Participation, Patients As Active Healthcare Partners, Patients As Safety Partners, Preventive Health, Preventive Medicine, Public Health, Team-Based Patient Care, The Empowered Patient Coalition
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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 »
March 9th, 2011 by DrWes in Opinion, True Stories
Tags: Biotronik, Cardiac Electrophysiology, Cardiology, Conflict of Interest, Dr. Martin Hudec, Dr. Wes Fisher, Eurospace, FDA MAUDE, Food and Drug Administration, Heat Dissipation, ICD, Implantable Cardiac Defibrillator, Independent Peer-Reviewed Scientific Journals, Medical Device Companies, Medical Device Industry, Medical Device Injuries, Medical Device Malfunction, Medical Device Safety, Medical Ethics, Medical Journals, Medical Manufacturers, Patient Advocacy, Quality Control, Regulating Medical Devices, Spontaneous Explosion of Implantable Cardioverter-Defibrillator
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On September 27, 2010, the peer-reviewed scientific journal Europace published online-before-print a case report entitled “Spontaneous explosion of implantable cardioverter-defibrillator” by Martin Hudec and Gabriela Kaliska. In the pdf of that case report a figure containing a color photo of the affected patient’s chest, chest X-ray, and two pictures of the extracted device (one seen here) were included.
The pictures and case presentation were dramatic and the case very rare. Both were perfect reasons to report such an important case to the medical literature. And so these doctors sent the case to Europace on June 29, 2010, and the article was accepted after revision on August 16, 2010, with the article appearing online September 27, 2010.
The authors must have felt very proud to have an article published relatively quickly, and the editors and reviewers of Europace must have thought the case was unique enough and important enough to have the article revised according to their specifications, then published online — until I reported the case on this blog on October 5, 2010, and included images from a portion of the case report’s figure.
Remarkably, later that same day, Europace removed the case report from its website without comment. The article simply vanished. I attempted to e-mail the editor of Europace to inquire about the reason for the retraction but received no reply, so I contacted the lead author, Martin Hudec, M.D. He kindly responded and I included his email response in the comments to my post two days later. Read more »
*This blog post was originally published at Dr. Wes*
March 8th, 2011 by KerriSparling in Humor, True Stories
Tags: Blood Sugar Control, Diabetes Control, Endocrinology, Kerri Morrone Sparling, Living With Diabetes, Managing Diabetes, Medical Humor, People With Diabetes, People Without Diabetes, PWD, PWoutD
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Life is trying to further mess with my diabetes control. (Or is diabetes trying to mess with life? Is a zebra white with black stripes, or a horse with black and white stripes?) I’m making efforts to get it together, but odd little things keep leaping in the way. Oh, efforts to thwart: Let me count the ways!
1. Recently, the jar of glucose tabs in my car was empty, so I was forced to stop at a random store and buy a regular Mountain Dew from the vending machine. But I had to open it and let it settle a little first before I could chug it, because draining a can of fizzy sugar would make me instantly ralph.
2. It snowed and/or was freezing on the days I went to the gym. But on the days I didn’t go? Sunshine and warm weather. Stupid weather wants me to be fat.
3. I lost my Dexcom receiver for about five hours, until I heard its muffled scream from between the couch cushions.
4. The sound of the clothes dryer finishing a load sounds like the happy tinkling of the chimes on an ice cream van, which spawns this borderline insatiable craving for ice cream.
5. During my meetings last week with PWoutD (people withOUT diabetes), my blood sugar cruised inexplicably into the stratosphere, forcing me to rage bolus in order to be able to eat more than the plate garnish during lunch. Read more »
*This blog post was originally published at Six Until Me.*
[Recently] NPR’s popular program “Talk of the Nation” covered something we discuss often: How e-patients find information and find each other online. Featured guests were Pat Furlong, mother of two boys with a rare disease who started an online community, and Susannah Fox of the Pew Internet and American Life Project, a frequent contributor here. The audio is here.
