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Kaiser Permanente is a different kind of health system, as we all know. It has been a major funder of the HBO Series Weight of the Nation — reviewed by Kristin Molven in a companion piece on THCB today. Matthew Holt interviewed Raymond Baxter who is Kaiser’s Senior Vice President of Community Benefit, Research and Health Policy about the role KP plays in community and policy issues, and what we know and what we should can and should do about obesity.
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For those of you who haven’t yet heard, I have recently been diagnosed with Stage IV inflammatory breast cancer. This rare form of breast cancer is known for its rapid spread. True to form, it has metastasized to my spine. This means my time is limited. As a nurse, I knew it from the moment I saw a reddened spot on my breast and recognized it for what it was.
My recent journey through the health care system has been eye-opening. In only a few months, I have witnessed the remarkable capabilities and the stunning shortcomings of our health care system firsthand. I am writing here because in the time I have left, I hope my story and my journey can help illustrate why some of the reforms that my colleagues and I at the John A. Hartford Foundation, as well as many others, have championed are so important.
At the cancer’s earliest appearance, I consulted with a well-regarded oncologist in New York. After the tests were done she regretfully informed me that my disease was not curable. Because my cancer is hormone-receptor-positive, she recommended an evidence-based course of medications aimed at slowing the progression of the disease. Before I committed to this course of care, I wanted to get a second opinion. I secured an appointment with the pre-eminent researcher/clinician in the field of inflammatory breast cancer, at a top medical institution in Philadelphia.
By JOHN R. GRAHAM
From the perspective of the average patient, going about his life unconcerned about health policy or economics, what is the most frustrating characteristic of U.S. health insurance? Surely, it is the madness of the billing cycle: Never knowing how much a medical service costs until long after you’ve received it, and sometimes only after a flurry of phone calls and paperwork that can take months to clear up.
This is surely why Michaela Dinan’s “winning entry” in a national essay contest, which invited people to submit anecdotes “illustrating the importance of cost awareness in medicine,” has struck such a chord. Ms. Dinan’s story concerned a billing error for inserting an IUD. Before the procedure, the patient learned (via “a few keystrokes”) that the cash price would have been $843.60. Insured, her out of pocket cost was to have been about $200. Instead, she received a bill for $1,100 that took months to sort out. I suspect that most readers and contributors at The Health Care Blog will use this story as further evidence of the need for a massive national investment in Health IT, along with Patient-Centered Medical Homes, Accountable Care Organizations, adherence to “meaningful use” standards, et cetera.
When the hypothetical naked, unconscious and alone patient presents at your ER with no immediately evident reasons for his distress and presumably holding his driver license between his clenched teeth, would you find it helpful if you could see a nicely typed, or hand written, list of diagnoses and current medications for this hapless person?
When a family moves across the country and brings in their eight year old for her first visit with the new pediatrician, would it be helpful to see a slightly fuzzy image of her immunizations list from back home?
When an elderly patient you’ve been seeing for umpteen years is shipped to the hospital in the middle of the night, would it be helpful to find the admission record in your to-do list for today?
Perhaps these things would be nice to have, but EHRs can’t talk to each other, so before any of these miracles can occur we must make EHRs communicate.
How do we make EHRs talk to each other? That’s simple: we look at how people talk to each other, and apply the same principles to EHRs. Thus, EHRs have to share the same language, use the same syntax, know when to speak and when to listen, and when not in physical proximity, use a variety of paraphernalia to carry voice over large stretches of land and sea. And since EHRs are really computers and this is after all the 21st century, we have the blueprint for a solution in our hands, because any computer in Papua New Guinea can talk to any computer in Boonville, Missouri. How? By using the magic of the Internet.Continue reading…
After a lot of pre-publicity, Medstartr is here. Modeled after Kickstatr and other crowdfunding sites, Medstartr is the brainchild of Alex Fair who is not only the founder of FairCareMD but also the generalissimo of the Health 2.0 NYC chapter. Lots has already been written about crowdfunding and even crowdfunding in health care (see this Health 2.0 News article on LumoBack last week), so I thought we’d let Alex describe it in his own words.
Matthew: If I have a company looking to raise money how does Medstartr work? What share of the money do you take?
Alex: Crowdfunding is a little like talking to your in-laws about your healthcare startup. Give a great explanation that works for everyone who has a stake in your project’s success: Patients, doctors, institutions, Big Pharma, HHS, and any partner you want to work with. Then list the rewards they get for supporting your project. Everything from a heartfelt thank you note, to a tax-deductible contribution (through our Partner Cancer101), to a production ready version of your product or service when it is ready to licensing rights for distribution. Next, spread the word through the groups of people who will love your products. Not just the Health 2.0 crowd, but everyone whom your innovation helps. MedStartr helps people fund the innovations in care that people care about and gives them a say in what comes next.
Big news over in the world of online patient data as DTC genomics company 23andme (partially funded by Google in the early days) buys crowdsourced cure community site Curetogether. My interview with Curetogether’s Alex Carmichael is at Health 2.0 News—Matthew Holt
After a four month “death watch” in the mainstream media for President Obama’s health reforms (following an ineffectual defense in March’s Supreme Court hearings), instant analysts were quick to characterize last week’s Supreme court decision as a ringing vindication of the Affordable Care Act and a big political victory for a struggling President Obama.
However, on closer reading, the instant analysts were wrong. The Roberts Court actually punched a huge hole in the law, potentially reducing its historic coverage expansion by as much as a third. In addition, the Court’s ruling will set off serious political conflict in southern and mid-western states that will ripple through those states’ health care markets, and fracture hospitals’ and health plans’ support for health reform.
Unlike the Act itself, which was almost unreadable, the Court’s opinions were written in English and will reward readers with fresh understanding of this complex law. They reveal two incommensurable philosophical positions eloquently argued and improbably bridged. There were two big surprises: Justice Robert’s apparent last minute support of the Court’s liberal wing in preserving the mandate and the remarkable decision to render the Medicaid coverage expansion optional! (Justice Kennedy, the presumed swing vote, actually supported killing the entire law).
Among the most frustrating dilemmas facing patients – and physicians – is when doctors are unable to assign a specific diagnosis. Just having a name for a condition can be remarkably reassuring to patients (and families), providing at least a basic framework, a set of expectations, and perhaps most importantly, an explanation for what the patient is experiencing.
Sara Wheeler, writing in the New York Times in 1999, poignantly described the experience of traveling through “the land of no diagnosis.” Ten years later, the NYT featured a story called “What’s Wrong with Summer Stiers,” about another patient without a diagnosis – and about a fascinating initiative at the NIH, the “Undiagnosed Disease Program” – specifically created to meet this need.
Like many in neuroscience, I’ve been thinking about the consequences of traumatic brain injury in football. In thinking about this, I think I’ve figured out how American-style football will end. I’m putting the over/under at about 10 years.
The simple explanation of football is this: football is the optimal activity to put the maximum explosive energy a human can develop and deliver it to another human, pause, catch your breath, and do it again. Football is a game of inches, and so the ball is carried by huge, weight-lifting sprinters who hurl their 200+ pound frames at a line of huge, weight-lifting thugs who try to stop them cold. I am not anti-football: I played a little football in high school, I played full-pads, full contact intramural football while an undergraduate (an insurance company’s nightmare), and was a rugby player and coach as a graduate student. My own athletic skill was thuggery.
The problem with this is that repetitive shocks to the brain seem to create pathology in the brain of the protein tau. Athletes who engage in contact sports have a tendency to suffer from chronic traumatic encephalopathy (CTE), which is identified pathologically by finding dense tangles of tau. Dense tangles of tau have been found in boxers, football players, professional wrestlers, and soldiers. There is concern in hockey players and soccer players who head the ball. One researcher found tau tangles in 8 of 9 donated brains from former NFL players. This kind of accumulation of tau is associated with young-onset dementia, cognitive change, and mood disorders.
The empowered patient, skeptical of professional authority, is not a new phenomenon: he was actually created by the American Revolution.
Reading through historian Gordon Wood’s Pulitzer Prize-winning book, The Radicalism of the American Revolution, I came across a passage describing how national independence from the British led to an independent turn of mind in other spheres. Wood writes that Charles Nisbet, president of Pennsylvania’s Dickinson College, complained as early as 1789 that Americans were carrying their reliance on individual judgment to ridiculous extremes. He fully expected, he said, to see soon such books as “Every Man his own Lawyer,” “Every Man his own Physician,” and “Every Man his own Clergyman and Confessor.”
In fact, New York’s Medical Repository wrote in 1817 of a shortage of “professional pharmacists” at a time when they did drug-mixing and diagnostic duties. But while the Repository acknowledged the lack of professionalism might lead to some mistakes, it continued that “these mistakes would be no more than occurred in Paris, London or Edinburgh, ‘where pharmacy, as a profession, is scientific, exclusive and privileged,’” writes Wood. (Emphasis in original) What a remarkable attitude!
Around this same time, the word “statisticks” appeared for the first time in American dictionaries. However, in America, there was a growing opinion that facts could speak for themselves without expert interpretation. As one popular journal put it in 1811, “The reflections arising out of [the facts] should be left to the reader.”
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