Patient Voices at CHCF’s Chronic Disease Care Conference
This is the second in a series of posts about the California HealthCare Foundation’s Chronic Disease Care conference (the first was Happy Dogs in a Pile of Sticks).
Patient Voices: Managing Chronic Conditions, Living our Lives
Ted Eytan snapped a photo that captured this session: Patient Involvement Makes People Smile
Here is each person’s story: Read more
Women and Health Care Disparities: Who Dies and Who Profits?
Are women dying of cancer the way they die of heart disease, because physicians trivialize their complaints and they are powerless to get second opinions?
How many decades has it taken for cardiologists, practitioners at the apex of the medical profession, to acknowledge that symptoms of heart disease for women may differ from those for men, and for general practitioners to address that fact? Older women die of heart disease in droves because they are treated too late or ineffectually, or they cannot get the referral. How long does it take for the public to catch on, or has it? Read more
In the Spin II: You and Your Billing Code
Pass the Valium!
Previously on e-Patients.net I recounted the crazy-making quest for a second opinion on an abnormal mammogram (microcalicifications) as per the advice of New York Times health columnist and breast cancer survivor Jane E. Brody. The gynecologist who ordered the mammogram refused to authorize a second opinion, however, deferring to the radiologist, who referred me back to the clinic and so on and so forth.
My primary care provider, who carefully reviewed the films and reports (sans compensation), thought a biopsy might be the safe thing. She was not the referring entity, however. The clinic was !#$^%$#@
I started over, skipping a few bases, securing a first-rate surgeon at the county hospital as the new referral entity. In a futile attempt to waste no one’s time except my own, I hand-carried a disc of the imaging studies to the appointment.
Right?
Wrong!
Read more
Internet diagnoses: Trust them or toss them?
This guest post is an article written by Lisa Neal Gualtieri, published in her local paper. It’s an example of widening distribution of principles and practices documented in the e-patient white paper. I’m grateful to Lisa for sharing these true stories of patients taking matters into their own hands, sometimes in collaboration with their care providers, sometimes despite them. We’ll discuss viewpoints in the comments.–e-Patient Dave
If you were a patient of Dr. Gregory House, you’d be afraid to tell him you’d researched your symptoms on the Internet. House, the lead character on the Fox TV show, would unceremoniously toss his stethoscope at you and proclaim that you are now a doctor as he nonchalantly walked out of his office.
But in the world beyond the television screen, many physicians have come to recognize the value of their patients’ use of the Internet.
And, if you are like most people, you turn to the Internet for health. Eighty-four percent of adult Internet users in the U.S. go online for medical information, according to a 2007 Harris poll. Some of them, like Diana C., believe the Internet saved their life.
Read more
How We Die
This is what I know about death.
Admitted to a nursing home with a broken hip-dehydration, my ninety-eight-year-old grandmother awoke from a deep slumber, laughing and clapping her hands when my five-year-old daughter played the violin.
A week later she had a stroke and could not swallow. Read more
In the Spin: Death by Referral
In October e-patients.net I recounted how my daughter was put through a spin cycle of referrals and medical misdiagnosis that nearly got her killed. The lump on her forearm that looked like a cyst was instead a deadly cancer.
The nightmare began at the local radiology practice, where my young teen, with no prior warning, was subjected to a long and agonizing MRI. The nurse, surprised by a request to talk to the radiologist, nonetheless complied. Thus came the infamous spiel, “Don’t worry mom. It’s probably not cancer . . . ”
Two weeks ago it was Groundhog Day — only this time I was the patient. Stunned and disoriented after being called back for a magnification mammogram, I listened as the radiologist (a different partner) briskly pointed to an area of increased calcification. Me not quite understanding calcification (as in bones?).
When pressed, he stated the obvious: microcalcifications could signal a pre-cancerous condition if not cancer. He recommended a follow-up in six months, after which I could return to the annual schedule.
I left in a daze. What had just happened?
Wall Street Journal goes e-Patient
Where have we heard this story before?
A friend of mine slipped on the sidewalk recently and broke her hip. She had surgery in one of the best hospitals in the country.
But it [wasn't their staff, it] was her grown daughter who noticed that she was having an adverse reaction to a pain medication. And that her IV drip had pulled out of a vein and was pumping her arm full of fluid. And that the hot compresses to reduce the swelling in her arm had left blisters on her skin. And that the blood-sugar test she was about to be given was meant for her roommate instead.
All MRIs Are Not Created Equal
Gina Kolata’s must-read article, “The Scan That Didn’t Scan,” in last week’s Science Times points out vast differences in the quality of MRIs as well as vast differences in the expertise of the radiologists who interpret them.
Patients need to understand this, because physicians sure as Hades aren’t going to tell you.
Kolata uses sports injuries as examples. With suspected cancers, the stakes are life and death.
One of the first physicians to almost get my teenage daughter killed was the well-intentioned local radiologist who assured us that the odd lump on her left forearm was “probably not” cancer, although he could not specify exactly what it was. Due to location of the tumor (near the ulnar nerve), the radiologist recommended that we NOT have the bump removed. “Don’t worry, mom….”
Extending Your Healthcare Dollar
50 Ways To Squeeze Value From Your Healthcare Dollar Without Killing Yourself.
An interesting list from one of the main websites specialized in frugal living. There is not much about patient empowerment but there are many interesting bits of advice. The comments reflect the growing consensus that knowledge is power.
Blogging to Save a Father’s Life
Yesterday, RocketBoom founder Andrew Baron took to the blogosphere to round up support in his efforts to get a rare drug approved for use in treating his father. His father was diagnosed with a very bad form of cancer called multiple myeloma and his dad’s doctor believes that there is a drug on this planet that has a chance in helping to save his life. It’s a long shot, but one you try when in desperate straits. TechCrunch joined in on the story and Xconomy has the details as to why the drug simply can’t be prescribed for an off-label use.
The drug in question is called Tysabri, and it is manufactured by a company called Biogen Idec. After getting FDA approval for this use, it was up to the company to make the final call on allowing the prescription. The company declined to do so, and so Andrew wrote the blog enty, which he calls an “Open Letter to James C. Mullen, CEO of Biogen.” In it, he lays out his case and, I believe, tries to shame the company into “doing the right thing.” Usually, it is an effective strategy, because a company would have to be some pretty serious PR lightweights to not appreciate the negative ramifications of allowing this story to snowball and into “Big Heartless Company Allows Dad to Die.”
Rather than debate the merits of whether Andrew Baron’s dad should get the drug or not (and whether this opens some sort of Pandora’s box for anyone else seeking the same drug for similar use), I want to focus on the e-Patients aspect of this story. That is, using a simple blog to get a personal health story out and stir up sympathy and action based upon it.
Once Andrew Baron published his Open Letter yesterday, it hit the blogosphere like a raging wildfire. Because Andrew Baron is fairly well-connected in the online technology world, his story was quickly picked up technology blogs. He’s also had the benefit of having some very well known politicians and celebrities make a case on his behalf.
Sadly, none of this has seemed to make much of an impact on Biogen nor its CEO at this time. Their PR representative is going around claiming it could harm their FDA standing and future trials of this drug to test its effectiveness in the treatment of multiple myeloma. (But it may just be about the company’s possible lawsuits surrounding Tysabri, no matter what liability limitations the family is willing to sign.) But regardless of the outcome, it demonstrates the power a lone voice can have in trying to change the system. And, if not change it for his father, at least educate people and make them aware of the current rules and unfairness in it. The blog comments on all of the above entries are interesting to watch how people are learning and educating themselves about this area “on the fly,” and gaining the benefit of new knowledge that they can then utilize in their own personal health care and that of their family.
The most amazing part of this story for me is that a single person, posting a single post to a single blog was able to rile up and educate a whole new set of people — folks who ordinarily wouldn’t much care about cancer and its treatment unless personally affected by it. That is the true power of e-patients — people learning and teaching others, and everyone coming together to try and problem solve to save someone’s life.
white paper
e-Patients:
How They Can Help Us Heal Healthcare
