Assuming something regarding your own health care can cost you money, cause you pain, and yes, even kill you. Here’s my list of potentially harmful assumptions:
1. No news is good news
If you have a test done and don’t hear anything about the result, do not assume it is fine. This assumption kills people. I have too many patients with too much information flying at me every day for me to catch every important detail. Sometimes things are missed, but sometimes the results don’t come to our office. We have trained our patients to expect an email or letter with their results within a certain amount of time, so they sometimes call when the test results don’t come in. I tell them to do so in the clinical summary sheet I hand out at the end of each visit, but the assumption remains.
Creative Commons did an amazing thing for copyright law. It made it understandable.
Creative commons reduced the complexity of letting others use your work with a set of combinable, modular icons.
In order for privacy policies to have meaning for actual people, we need to follow in Creative Commons footsteps. We need to reduce the complexity of privacy policies to an indicator scannable in seconds. At the same time, we need a visual language for delving deeper into how our data is used—a set of icons may not be enough to paint the rich picture of where you data is going.
In the fall of 2009, at the height of fears over swine flu, our research group discovered that a majority of clinical trial data for the anti-influenza drug Tamiflu ― data that proved, according to its manufacturer, that the drug reduced the risk of hospitalization, serious complications and transmission ― were missing, unpublished and inaccessible to the research community. From what we could tell from the limited clinical data that had been published in medical journals, the country’s most widely used and heavily stockpiled influenza drug appeared no more effective than aspirin.
After we published this finding in the British Medical Journal at the end of that year, Tamiflu’s manufacturer, Roche, announced that it would release internal reports to back up its claims that the drug was effective in reducing the complications of influenza. Roche promised access to data from 10 clinical trials, 8 of which had not been published a decade after completion, representing more than 4,000 patients from every continent except Antarctica. Independent verification of the data seemed imminent. But more than two years later, and despite repeated requests, we have yet to receive even a single full trial report. Instead, the manufacturer released portions of the reports, most likely a very small percentage of the total pages. (One of us, Tom Jefferson, has been retained as an expert witness in a lawsuit relating to some of these issues.)
I can’t tell you exactly when it happened, but sometime in the past two decades, the practice of medicine was insidiously morphed into the delivery of health care. If you aren’t sure of the difference between the two, then “God’s Hotel” is the book for you. It’s an engaging book that chronicles this fin-de-siecle phenomenon from the perspective of San Francisco’s Laguna Honda Hospital, the last almshouse in the United States.
Dr. Victoria Sweet, a general internist, came to Laguna Honda for a two-month stint more than 20 years ago and ended up staying. Laguna Honda was home to the patients who had nowhere else to go, who were too sick, too poor, too disenfranchised to make it on their own. The vast open wards housed more than a thousand patients, some for years. Laguna Honda was off the grid, and this, Sweet discovered, was to the benefit of the patients.
Unencumbered by HMOs and insurance companies, the doctors and nurses practiced a very old-fashioned type of medicine, “slow medicine,” as Sweet terms it. There was ample time for doctors and nurses to get to know their patients, and ample time for patients to convalesce. Many a written-off patient recovered within the comforting, unhurried arms of Laguna Honda.
Over the past decade, I’ve seen a number of studies asking people whom they trust among various health care stakeholders. Nurses, pharmacists, and doctors always come out at the top. Beyond that:
·Trust of hospitals tends to be high (60–80%)
·Trust of health plans is at the bottom of the heap (10–20%)
Is this written in stone for the future? I don’t think so…and the dynamics for change are in motion. Please read on.
Here’s the emerging picture I’m seeing:
·Hospitals are dragging their feet in connecting you with your electronic health information.
·Health plans are highly motivated to connect you with your health information.
Hospitals Keeping You from Your Health Records
Yesterday the American Hospital Association released a 68 page letter commenting on proposed regs for Meaningful Use Stage 2. Putting aside my usual analytic tendencies, I’ll simply describe the letter as whiny, snivelly, “can’t do”, mean, and thick-headed.
“How can the government make us buy health insurance? What gives them that right?”
Sitting on my left while our airplane raced above the clouds, Elizabeth was clearly upset about Obamacare. She wondered why the bill had to be so long, and why Obama would endorse a plan that doubled her health insurance costs. But nothing vexed her more than the individual mandate.
At least that’s what I though until I spoke with her at greater length, and she revealed a profound truth to me about people’s attitudes towards the mandate and towards Obamacare more generally: she showed me that deep down she liked the idea of the mandate, once she realized its important role in accomplishing goals people on all sides of the political spectrum care about deeply.
We were flying towards North Carolina the day before the Supreme Court held its oral arguments on Obama’s healthcare plan. Elizabeth had heard a great deal about the mandate. She read The Wall Street Journal regularly, in part because it was so relevant to her work in banking. And she enjoyed watching Bill O’Reilly on Fox News, but not Hannity, who she thought was “too extreme”. She was by no means a conservative extremist. She had major concerns about the banking industry for example, and as a Christian felt strongly that income inequality is a moral problem that neither party was addressing in an effective manner. But she was solidly Republican, no doubt about that, and she agreed with most people in that political party that Obamacare was hurting the economy. And above all she believed the health insurance mandate was “un-American.”
In case you missed it, a recommendation came out last month that physicians cut back on using 45 common tests and treatments. In addition, patients were advised to question doctors who recommend such things as antibiotics for mild sinusitis, CT scans for an uncomplicated headache or a repeat colonoscopy within 10 years of a normal exam.
The general idea wasn’t all that new — my colleagues and I have been questioning many of the same tests and treatments for years. What was different this time was the source of the recommendations. They came from the heart of the medical profession: the medical specialty boards and societies representing cardiologists, radiologists, gastroenterologists and other doctors. In other words, they came from the very groups that stand to benefit from doing more, not less.
Nine specialty societies contributed five recommendations each to the list (others are expected to contribute in the future). The recommendations each started with the word “don’t” — as in “don’t perform,” “don’t order,” “don’t recommend.”
Could American medicine be changing?
For years, medical organizations have been developing recommendations and guidelines focused on things doctors should do. The specialty societies have been focused on protecting the financial interests of their most profligate members and have been reluctant to acknowledge the problem of overuse. Maybe they are now owning up to the problem.
Researchers at USC recently published a study designed to find out how much people are willing to pay for better drug coverage from their health insurance plan. The question they posed to the general public was straightforward: How much extra money would you pay per month for a health insurance plan that would pay for “specialty drugs” if you need them?
Specialty drugs are expensive new treatments for diseases like leukemia, multiple sclerosis and rheumatoid arthritis. These drugs often cost tens of thousands of dollars, and in some cases even run into six figures per patient. But these high costs can be accompanied by significant benefit. Gleevec for example can dramatically increase life expectancy for people with otherwise fatal leukemia.
Keep in mind that not only are specialty drugs expensive but they are being used with increasing frequency. According to the USC team, 3 out of 100 people in the United States will use at least one specialty drug in the following year.
How much would you pay to make sure you aren’t responsible to pay for these drugs out of pocket? Would you be willing to give your insurance company an extra $5 per month? $10? Maybe even $20?
The USC team found that, on average, people were willing to spend around $13 extra per month to make sure their health insurance plans cover such specialty drugs. (The study was published in the April issue of Health Affairs, and was led by John Romney.) To put that into perspective, the actuarial cost of such coverage—how much insurance companies would expect to spend per person if everyone obtained such coverage—is around $5 per month.