Categories

Above the Fold

The Great Coronary Angioplasty Debate: Giving Patients the Right to Speak

Earlier this month, the editors of THCB saw fit to post my essay, “The End of the Era of Coronary Angioplasty.”

The comments posted on THCB in response to the essay, and those the editors and I have directly received, have been most gratifying. The essay is an exercise in informing medical decisions, which is my creed as a clinician and perspective as a clinical investigator.

I use the recent British federal guideline document as my object lesson. This Guideline examines the science that speaks to the efficacy of the last consensus indication for angioplasty, the setting of an acute ST-elevation myocardial infarction (STEMI). Clinical science has rendered all other indications, by consensus, relative at best. But in the case of STEMI, the British guideline panel supports the consensus and concludes that angioplasty should be “offered” in a timely fashion.

I will not repeat my original essay here since it is only a click away. The exercise I display is how I would take this last consensus statement into a trusting, empathic patient-physician discourse. This is a hypothetical exercise to the extent that little in the way of clear thinking can be expected of a patient in the throes of a STEMI, and not much more of the patient’s caring community.

So all of us, we the people regardless of our credentials, need to consider and value the putative efficacy of angioplasty (with or without stenting) a priori. For me, personally, there is no value to be had rushing me from the “door to the balloon” regardless of the speed. You may not share this value for yourself, but my essay speaks to the upper limits of benefit you are seeking in the race to the putative cure by dissecting and displaying the data upon which the British guideline is based.

There is an informative science, most of which cannot deduce any benefit and that which deduces benefit finds the likelihood too remote for me to consider it worth my attempt. A hundred or more patients with STEMI would have to be rushed to the catheterization lab to perhaps benefit one (and to harm more than one).

Continue reading…

State Surveillance Endangers the Affordable Care Act: A Case Study

… and a call to action. This case study is based on my meeting with the Center for Health Information and Analysis (CHIA) in my home state. CHIA is an all payers claims database, a massive collection of diagnoses, locations, dates and prices for all of your health services across all of your providers and insurers. Whether it’s claims or health records, almost every state and many private clearing houses are setting up to monitor you.

Your information can be used by business to manipulate prices for maximum profit, or by you to inform your choice of health insurance plans and health care providers.

Unfortunately, business can get your information but you can’t. This reflects an industry strategy to obstruct the market-based features of the Affordable Care Act. I hope you will take this case study, edit it, and file it with the Attorney General and Governor in your state to ask for your data as a consumer protection issue. That’s what I’m about to do.

My state is #1! Go Massachusetts! My state is #1 in health care costs. It’s also #1 in implementing a health insurance exchange (Romneycare 2006) and a leader in state surveillance with the 2012 cost containment law known as Chapter 224. Chapter 224 mandates various state surveillance mechanisms including a health information exchange that monitors encounters and an all payer claims database called “the center”.

The cost containment law also includes some consumer protections. Line 1909 states:

“To the maximum extent feasible, the center shall also make data available to health care consumers, on a timely basis and in an easily readable and understandable format, data on health care services they have personally received.”

Although the state surveillance is in place, and the price fixing that keeps us #1 is ongoing, the consumer protection part of the law is not implemented. So, I took the opportunity to meet with the executive director of CHIA and their chief legal counsel and get the scoop on why the state is not following the law. To paraphrase their explanation: “It’s too hard.”

Continue reading…

Why PCORI Should Be Very Wary of Studying Medical Devices

In the New York Times on Thursday, October 17, Topher Spiro wrote an important op-ed expressing why we need to hold onto the medical device tax that helps pay for parts of the Affordable Care Act. Spiro backs up his argument by pointing out how profitable the device industry is. To his argument I would also add the fact that this will provide the industry with more paying customers. Certainly it can afford to pay the taxes.

But I diverge from Spiro on a proposal he floated near the end of his piece:

“To complement these efforts, the new Patient-Centered Outcomes Research Institute [PCORI], a non-governmental body created by the Affordable Care Act, should pay for research that compares the effectiveness of devices so physicians can make informed choices. (Three years into its existence, the institute has initiated few, if any, studies of medical devices.”

Listen to me PCORI. Don’t follow this advice, unless you plan not to survive to celebrate your fourth birthday.

Consider what happened to the Agency for Healthcare Policy Research (AHCPR), when it tried to help physicians figure out the best way to treat low back pain. AHCPR was created as a stand-alone research institute, akin to the NIH, but one that would focus not on the basic science of treating disease, but instead on evaluating how well existing treatments worked.

Continue reading…

A Pragmatic Fix for Healthcare.gov & the HIXs

By MATTHEW HOLT

By now even those of us who originally thought that we were seeing minor teething troubles are no longer deluding ourselves. Healthcare.gov, the federal health insurance exchanges (HIXs), and many of the state HIXs are in deep trouble.

One summary of many articles about this is up at ProPublica. But now that the House Republicans have stopped trying to destroy the country and themselves, attention will turn quickly to this problem, and–much worse–beyond the politics, there is now only eight or so weeks to get ready for actual enrollments for Jan 1, once you take out Thanksgiving and the Christmas holiday. Getting ten or twenty million new customers on board, not to mention the small businesses who want to move from their current insurance onto the exchanges, seems like an impossible task.

But, if we can muster the will, there may be a solution. (And yes, I want it to work, faut de mieux). Quietly last summer two private online insurance brokers, eHealth which runs the eHealthInsurance.com site, and GetInsured, struck deals with HHS which allowed them to enroll individuals in plans that qualify for the mandate under the ACA, and more importantly, connect with the “Health Exchange Data Hub” that figures out whether the enrollee qualifies for a subsidy (theoretically by connecting to the IRS).

That part of the transaction, though, could be done by attestation and dealt with later. In other words, someone buying health insurance could state what their income will be in 2014 (or was in 2013) and if it ends up varying dramatically on their 1040 then in 2015 they will pay or receive the difference. Essentially this is something all Americans recognize–the IRS asks you for more or gives you a tax refund well after the fact, and H&R Block and their competitors make a business of giving you the refund right away (and of course charge you for the privilege).

That is important because what seems to be crippling the HIXs right now is not the back end, it’s the front end. (Go to this Reddit thread for lots more deeply technical conversation about that). Showing people options, comparing plans, setting up accounts–that’s all standard web stuff and most of the HIXs can’t do it. Those private brokers have both smoothly done this for years and at least the two I mentioned have built comparative tools for the new insurance plans. (Both were demoed at Health 2.0 on October 1).

So why can’t we put prominent links to eHealthInsurance.com and GetInsured on the Healthcare.gov site and move people over there? Continue reading…

My Personal Affordable Care Act–A Manifesto

The Founding Fathers had one.  Karl Marx had one.  Bertrand Russell and Albert Einstein had one.  And, now I have one: a manifesto, declaring my intent to live my life with as little interaction as possible with the US health care system by doing what the Affordable Care Act (ACA) tells me by omission I do not need to do: take responsibility for myself.

This is my Personal Affordable Care Act.

My manifesto is an algorithm for thriving in spite of the government’s naked and absurd attempt to define health as something that begins in the clinic.  My goal is to make myself and my family as scarce as possible within the health care system.

The ACA is a collective solution to the mass failure of individual will.  Our transformation into an information culture actually worsened the malady.  We are so conditioned to success at the speed of a search engine that, like the person who aspires to retire early, but refuses to save, we’ve forgotten to manage the fundamentals.

First, that every healthy lifestyle decision you make today, from diet and exercise to outlook and mood, requires thought and an exertion of will.  Even in the age of Google, volition matters, and choosing not just wisely, but strategically, is an option available to most people.

Second, despite revolutionary democratization of medical information, we still don’t do our homework.  Americans visit physicians 3 times per year on average, and the number one reason for the visits is “cough.”  Really?  You need to go to the doctor for a cough?  Unless you have a fever, chest discomfort, bloody sputum, or the cough lasts for weeks and keeps you up at night, it is almost certainly viral or related to an allergen and self-limited.

Continue reading…

The Federal Shutdown is Over. The Health Care Fight is Just Getting Started. Here’s What May Happen Next…

Social security numbers allegedly passed around in clear sight. Page after page of unworkable code. And no clarity on when it will all be fixed.

Just another day of trying to log in to healthcare.gov.

Two weeks after its launch, the federal health insurance exchange is a “failure,” says the Washington Post‘s Ezra Klein. Some officials deserve to be fired, according to Robert Gibbs, who until February 2011 was one of President Obama’s closest advisers.

And those are the Affordable Care Act’s supporters.

Even the president conceded on Tuesday that healthcare.gov had “way more glitches than I think are acceptable.”

Those glitches could take months — or even years — to fix, according to reports. But there’s a key deadline looming: Jan. 1, 2014, when the ACA’s individual mandate takes effect.

Under the mandate, millions of Americans who were expected to use the exchanges to obtain health insurance will face fines if they haven’t purchased coverage by Feb. 15, raising the question of whether the mandate or other Obamacare provisions should be postponed — an uncomfortable position for an administration already trying to implement a politically divisive law.

But at this late date, what parts of the ACA can legally be delayed?

“In a sense, all of it,” Timothy Jost, a Washington & Lee law professor, told me. But “there’d be a high political price to pay. And delay could result in litigation.”

Jost was among several experts who spoke with me about the health insurance exchanges’ bumpy rollout, the ripple effects for the mandate and other provisions, and what it could all mean for implementing the ACA.

What Agencies Can and Can’t Do
When considering a delay to Obamacare, it’s important to understand the difference between statutory and discretionary deadlines.

For example, the ACA’s language directly calls for many mandatory deadlines — like rolling out the individual mandate or implementing a slew of insurance market reforms on Jan. 1, 2014.

But the agencies also have had considerable leeway on how they’ve chosen to apply the law — like choosing an Oct. 1 launch date for the exchanges, a deadline that retrospectively seems ambitious.

Continue reading…

Knocking on Health 2.0’s Door

I recently attended the flagship Health 2.0 conference for the first time.

To avoid driving in traffic, I commuted via Caltrain, and while commuting, I read Katy Butler’s book “Knocking on Heaven’s Door.”

Brief synopsis: healthy active well-educated older parents, father suddenly suffers serious stroke, goes on to live another six years of progressive decline and dementia, life likely extended by cardiologist putting in pacemaker, spouse and daughter struggle with caregiving and perversities of healthcare system, how can we do better? See original NYT magazine article here.

(Although the book is subtitled “The Path to a Better Way of Death,” it’s definitely not just about dying. It’s about the fuzzy years leading up to dying, which generally don’t feel like a definite end-of-life situation to the families and clinicians involved.)

The contrast between the world in the book — an eloquent description of the health, life, and healthcare struggles that most older adults eventually endure — and the world of Health 2.0’s innovations and solutions was a bit striking.

I found myself walking around the conference, thinking “How would this help a family like the Butlers? How would this help their clinicians better meet their needs?”

The answer, generally, was unclear. At Health 2.0, as at many digital health events, there is a strong bias toward things like wellness, healthy lifestyles, prevention, big data analytics, and making patients the CEOs of their own health.

Oh and, there was also the Nokia XPrize Sensing Challenge, because making biochemical diagnostics cheap, mobile, and available to consumers is not only going to change the world, but according to the XPrize rep I spoke to, it will solve many of the problems I currently have in caring for frail elders and their families.

(In truth it would be nice if I could check certain labs easily during a housecall, and the global health implications are huge. But enabling more biochemical measurements on my aging patients is not super high on my priority list.)

Continue reading…

Chaos and Order: An Update From Patient Privacy Rights

Thanks to the flood of new data expected to enter the health field from all angles–patient sensors, public health requirements in Meaningful Use, records on providers released by the US government, previously suppressed clinical research to be published by pharmaceutical companies–the health field faces a fork in the road, one direction headed toward chaos and the other toward order.

The road toward chaos is forged by the providers’ and insurers’ appetites for categorizing us, marketing to us, and controlling our use of the health care system, abetted by lax regulation. The alternative road is toward a healthy data order where privacy is protected, records contain more reliable information, and research is supported or even initiated by cooperating patients.

This was my main take-away from a day of meetings and a panel held recently by Patient Privacy Rights, a non-profit for whom I have volunteered during the past three years. The organization itself has evolved greatly during that time, tempering much of the negativity in which it began and producing a stream of productive proposals for improving the collection and reuse of health data. One recent contribution consists of measuring and grading how closely technology systems, websites, and applications meet patients’ expectations to control and understand personal health data flows.

With sponsorship by Microsoft at their Innovation and Policy Center in Washington, DC, PPR offered a public panel on privacy–which was attended by 25 guests, a very good turnout for something publicized very modestly–to capitalize on current public discussions about government data collection, and (without taking a stand on what the NSA does) to alert people to the many “little NSAs” trying to get their hands on our personal health data.

It was a privilege and an eye-opener to be part of Friday’s panel, which was moderated by noted privacy expert Daniel Weitzner and included Dr. Deborah Peel (founder of PPR), Dr. Adrian Gropper (CTO of PPR), Latanya Sweeney of Harvard and MIT, journalist Sydney Brownstone of Fast Company, and me. Although this article incorporates much that I heard from the participants, it consists largely of my own opinions and observations.

Continue reading…

Health 2.0 Co-Founders Address How to Adapt to a New World of Health Care and the Problems it Encompasses

Health 2.0 co-founders Matthew Holt and Indu Subaiya gave separate keynote speeches on the second day of Health 2.0’s 7th Annual Conference earlier this month, setting the tone for the remainder of the event.

Holt began by giving an overview of the rapidly changing world of health care and his advice for the viewers in adapting to such changes.  He spoke of the comparatively low use of EMRs, the importance of trackers, and sharing data between consumers and professionals as specific challenging trends.

Watch Matthew’s full keynote here.

CEO Indu Subaiya followed Holt and addressed the “seven deadly sins of health care,” which ranged from too much testing to end of life care.  She compiled this list after an active conversation with eight of her trusted colleagues about the parts of health care which might not be “typically kosher.”  Subaiya shifted perspective from specific negativities to look at the health care system in a new way; shining light on potential ways to improve these problems. Subaiya’s keynote left the room with an optimistic view of real problems in the health care system.

Watch Indu’s full keynote here.

assetto corsa mods