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NOTHING ABOUT ME WITHOUT ME

By e-patients, healthcare industry, healthcare price transparency

The last few weeks have been a cluster-dance of activity in the e-patient community. Actually, pretty much any week is a fast dance in the participatory medicine world, given the drive toward healthcare reform in the US.

The loudest dance orchestra has tuned up around the controversy created when the American Hospitalspm logo Association (AHA) posted its comments on the Phase 2 Meaningful Use (MU2) rules, which are part of the Patient Protection and Affordable Care Act (PPACA), a/k/a healthcare reform or Obamacare, depending on what your preferred nomenclature is.

The bottom line: even though the Centers for Medicare and Medicaid Services (CMS) has made re-admissions to the hospital within 30 days after discharge a giant “we won’t pay you for that” red flag, the AHA stood up on its hind legs and said, regarding MU2, that they did not want to make records available to patients for 30 days post-discharge.

Which seems to mean that the AHA is either totally OK with not getting paid for a re-admission within those 30 days, or they’re trying to use a giant hammer to kill the adoption of electronic medical records technology.

A third explanation – and one that I think is actually what’s happening here – is that the last couple of years of massive IT deployment in healthcare has been really hard. And the policy wonks who wrote the comment for the AHA have little or no dealings with actual patients. Because anyone with a brain who works in healthcare knows that not empowering patients to manage their care is the best path to both bad outcomes and bankruptcy.

If you’d like to read all about the issue, you should start with

David Harlow’s Healthblawg

e-Patient Dave

Healthcare activist artist Regina Holliday (the Rosa Parks of patients’ rights)

The Sad Story About Joint Replacement (in the US, at least)

By healthcare industry, healthcare price transparency

A hip or knee replacement can offer people with chronic joint pain the chance to return to an active life. The potential promise of being pain-free, in some cases after decades of restricted movement, is a powerful incentive to arthritis sufferers around the world.

I know from direct observation that not all joint replacements result in the patient returning to the dance floor, or the jogging track, or even the walking path. My dad had a hip replacement in 1996 that inserted the wrong appliance, leading to 18 dislocations in the ensuing three years. The issue was finally resolved with yet another surgery, paid for by Medicare and my father’s supplemental insurance. This was a doctor error, not an appliance failure.

Imagine my surprise this past Saturday (April 3, 2010) at this piece in the New York Times, revealing that almost all manufacturers of artificial joints offer no warranty whatsoever to US consumers who wind up with defective products surgically strapped on to their skeletal structure. The dodge is facilitated by the way device manufacturers sell the implants: to the hospital, not to the patient.

The skids on that dodge are further greased by the consulting fees paid to many surgeons by implant makers, giving those surgeons little impetus to bite the hand that feeds them.

Here’s a chart for the visual learners:

NYT 4-3-10 hip replacement warranty stats

US device manufacturers who sell artificial joints overseas offer warranties in the countries outside the US where their implants are used. Why not here? One reason could be our tort-crazy system. Got a consumer complaint? Don’t try to work it out directly – hire a lawyer and sue the bastards.

That does not, however, excuse the failure of medical device makers to offer any kind of warranty on their products. And it’s not excuse for their expectation that we – taxpayers (Medicare and Medicaid), insurers, and patients – foot the bill for their lousy manufacturing processes.

This is another example of why we need what I call “real health care reform” in the US: fully-informed consumers (patients) communicating fully and frankly with health care providers (doctors, hospitals, device manufacturers). Price and outcome disclosures at the outset of every interaction. Both sides held to account on compliance with best practices.

Wow – what a revolution that would be.

That’s my story, and I’m stickin’ to it.

Got comments? Brickbats? Kudos? I welcome all. Bring it on.

A Modest Proposal (on Health Insurance Reform)

By healthcare industry, healthcare price transparency, politics

~ Casey Quinlan © 2010 [originally posted on the now-defunct Disruptive Women in Health Care blog, posted here for posterity.]

I will admit to a bias on the subject of health insurance, and healthcare reform: I’m one of the millions of America’s uninsured. I’m female, over 50 (I told you, now I’ll have to kill you), and I was diagnosed with cancer in December of 2007.

The first of those facts – being female – is the biggest dinger of the three when it comes to health insurance premiums. The reasoning there: women use more health services, starting in their teens and 20s and continuing through menopause. The second – my age – could signal a better rate, since women typically tail off in their use of healthcare in their mid-50s. However, the third fact – cancer within the last 10 years – gets me insurance coverage quotes of $2,000 per month, with a deductible between at $3,000 to $6,000 a year.

For the math-challenged, that’s between $27,000 and $30,000 out of my pocket per year before insurance covers Dollar One. Since that amounts to much of my annual pre-tax income in each of the two years since Cancer Year – 2008 was the last year I had health insurance coverage – I’ve remained on the uninsured list. And developed some fierce opinions about the future of healthcare and health insurance in the US.

The Patient Protection and Affordable Care Act, a/k/a “health care reform,” passed earlier this year includes some help for my situation…in 2014. Meanwhile, I’m managing to get the oral chemo meds I’ll be taking until 2013 (which cost $500 a month) with the help of a community clinic. And I’m keeping my fingers crossed that I stay as healthy as I was before the cancer diagnosis, and as I have been since I finished radiation treatment in 2008.

That’s my current health insurance policy: crossed fingers.

There are two things that I think have to happen to bring about meaningful change in the healthcare cost/payment/insurance conundrum, for me and everyone else:

  1. Tort reform*
  2. Severing health insurance from employment

I realize that the tort bar, the health insurance industry, and pretty much everybody with a job-related health benefits package will take out a hit on me for making those suggestions. But the system has fallen, it can’t get up, and until major changes – not the chipping-away-at-the-edges approach of the current iteration of “health care reform” – are made in both the US legal system and how health insurance is marketed and sold, meaningful change doesn’t have a prayer.

How would tort reform help? Defensive medicine – practicing medicine with one eye over your shoulder looking for lawyers – adds as much as $45.6Billion-with-a-b annually to US spending on healthcare, according to a Harvard study published in September. That may seem like a drop in the bucket when the total annual spend on healthcare in this country is $2.3Trillion-with-a-t, but those dollars are all coming out of our pockets one way or another. Whether it’s in higher health insurance premiums, deductibles, fee increases to help providers cover those who can’t pay, fee increases to help defray the costs of malpractice insurance, or tax dollars for Medicaid and Medicare, we pay for it.

Reducing the dollar impact of medical liability would start to address some of those costs. Tort reform would give providers a defined worst-case scenario for liability, and would reduce the sue-the-bastards incentive for patients (and their lawyers) who don’t get the outcome they want from treatment. There are no guarantees in medicine, other than that there are no guarantees in medicine. Patients who are harmed by doctors that are unfit to practice wouldn’t be left without recourse, but the dollar amount of settlements would be capped.

Now, on to my really controversial suggestion: severing the link between health insurance and employment. Employer-paid health insurance benefits weren’t common in the US until World War II, when stiff wage controls made defense plants and other employers get creative to attract and keep good employees. They came up with offering to pay for workers’ health insurance. Thus was employer-sponsored group health insurance born, and the individual health insurance market stamped with an expiration date.

If you’re selling something, wouldn’t you rather package and sell it to as large a group as possible? Insurers, helped along by federal labor laws, have had a great revenue model: sell to large employers, keeping their annual premium-per-employee at an acceptable level because of the size of the risk pool. Cherry-pick the individual market, and put a high price tag on coverage for individuals who look like they might get sick – like women.

I’m actually quite pleased with one of the provisions in the health care reform bill fines employers with 50 or more employees $2,000 for each worker if they don’t provide health benefits. Why? Because the largest US employers – Walmart 1,000,000+ US employees, Verizon 200,000+, UPS 350,000+ in the US, to name a few – will look at that figure, do the math, and discover that the fine will save them money.

Again, for the math challenged: 1,000,000 employees would cost Walmart $2Billion-with-a-b in fines. Sounds like a whacking huge amount of money…until you calculate the cost health insurance benefits for those 1,000,000 employees using the average premium, which runs between $4,000 (single coverage) and $10,000 (family) per year. The fine would save Walmart $4-10Billion a year. They could even offer their employees help buying coverage, and still save some serious money.

And break the tie between group coverage and employment.

What would happen then? I think the American people can get together and drive the market as one big coast-to-coast group, using consumer-driven health plans** (CDHPs) combined with health savings accounts (HSAs). I believe that one of the causes of the healthcare cost conundrum in the US is the passive attitude most Americans have about their health, and healthcare. Decades of coverage paid for with “other people’s money” (employer-sponsored plans) have turned us into a nation of mindless medical consumers. We want cutting-edge care, we want second, even third, opinions, we bitch about $100 co-pays, we want to never have a bad outcome. Oh, and by the way, we don’t want to pay for it.

CDHPs would help make us mindful again: about the costs of healthcare, about the impact of our choices and behavior on our health, about how to get the most value for our healthcare dollar. A consumer-driven plan – also called a high-deductible plan – has a lower premium than traditional PPO or HMO plans due to that higher deductible. It also has no co-pays. You pay for care until you max out your annual deductible – between $1,000 and $5,000 per year – and are fully covered after that. Some CDHPs cover preventive and screening care, like annual physicals and mammograms, outside the deductible.

To be truly effective, CDHPs must be tied to HSAs, both to help consumers pay their deductible costs and to encourage them to save money for future healthcare costs. Making HSA contributions with pre-tax money makes HSAs “IRAs for healthcare,” with tax penalties for non-healthcare withdrawals. Since consumers – patients – will be paying for healthcare out of their HSAs, they’ll have an incentive to both ask what a procedure or prescription costs, and to ask questions about the cost of treatment options.

We’re a consumer nation. We shop for deals on flat screen TVs, cars, iPods, and breakfast cereals. Isn’t it time we did the same thing for prescriptions and hospital costs? I for one would jump at the chance to enroll in a CHDP – unfortunately, they’re not offered to individuals in the state where I live.

Don’t get me started on state insurance commissions…

  • [2021] I no longer subscribe to this idea – not that tort reform is a terrible idea, just don’t think it would help move the needle, or the mind-set, of what I call dinosaur docs (MDs over 60 years old who have “we’ve always done it this way” syndrome)

** [2021] CDHPs have proved to be a trash fire, since too few employers have elected to fund HSAs, and individuals who have bought insurance on the Affordable Care Act exchanges have found that CDHPs are basically just catastrophic care coverage. Their out of pocket expenses are high enough that many are now foregoing care rather than seeking medical care and paying out of pocket until their deductible is met.

Health Care Storytelling

By e-patients, healthcare industry, storytelling

In all the sturm und drang over the US health care system in the last couple of years – and the last many decades – one voice seems to be largely missing in the discussion.

We’ve heard from health care providers – hospitals, doctors, et al.

We’ve heard from insurance companies.

We’ve certainly heard from politicians.

We have not, however, really been hearing from patients, unless some disease sufferer with a story to tell to support the POV of a health care provider, an insurer, or a political position gets trotted to the microphone to tell his or her story.

As social media rises as the brave new communication platform for any and all global-village ideas and events, health care is starting, sloooooowly, to dip its toe into social networking as a tool to get their message out. What we have not seen, though, is a lot of listening, other than the usual suspects listening to (and yammering at) each other.

There are a number of community sites that have grown up around specific conditions and issues – Fran Drescher’s Cancer Schmancer community and Lance Armstrong’s LIVESTRONG efforts around cancer spring to mind.

Microsoft has launched MyHealthInfo.com, and Google’s got Google Health.

Patients are out there: on Facebook, on Ning, on Twitter, and other online community sites like SparkPeople.com. However, less than 20% of doctors are currently using technology to manage their patients’ medical records – given that resistance to technology, combined with the strictures of HIPAA (which I swear must mean Health Insurance Paying All Attorneys), it’s easy to see why the health care industry seems to be MIA in the Web 2.0 world.

One of the reasons cited by health care providers for not using web tools to communicate with their patients is privacy concerns. That is a legitimate concern, but I think it’s being used as a smokescreen – there are plenty of security apps and protocols available that would allow a dialogue between doctors and patients without having the conversation become Twitter status updates.

How refreshing, even revolutionary, would it be to have a way to communicate with your doctor and his/her staff online? To log in, schedule an appointment, enter your blood sugar numbers or blood pressure, request a prescription refill, ask a question, get a referral, download your medical records.

The health care sector has been losing the trust of its customer base for a long time – gone are the days when doctors were looked at as elevated beings who knew way more than the average dude (dude, in this usage, is gender neutral).

Doctors can take some of the blame there, since they’re not batting 1.000 on calling out the bad apples in their bunch, and have, as a group, been acting as the supply-chain for the pharmaceutical industry more than is, um, healthy.

The pharma industry takes some heat on the trust gap, too, since they seem to be all about “ask your doctor” and not so much about “you’ll be able to afford this stuff”. And don’t even mention Celebrex or Vioxx…

These revolutionary web-enabled conversations would allow doctors and other health care professionals to start to build those one-on-one and one-on-many trust relationships that could actually bridge that trust gap. Even help us understand, manage, and maintain our health.

Patients need to take the lead here, I believe, because left to their own devices doctors, hospitals, insurers, and politicians will continue to talk at each other, and not listen to the ultimate consumer of health care: the patient.

That’s my story, and I’m stickin’ to it.

A Great Story On Healthcare IT

By EHR, health records, healthcare industry

In today’s Health Care Blog, David Kibbe MD and Brian Klepper PhD continue a discussion that they kicked off with an open letter to the incoming Obama administration in December about health care IT and electronic medical records (EMR/EHRs).

Patients think that EMR/EHRs are the answer to their prayers – no more forms to fill out, no referral slips to carry around, hey-presto, it’s all on this flash drive. What Kibbe and Klepper point out is that’s just the tip of the iceberg:

“…we are realistic about the problems that exist with health information technologies as they are currently constituted. As we described in our previous post (and contrary to some recent claims), most products are NOT interoperable, meaning licensees of different commercial systems – each using different proprietary formats – often find it difficult to exchange even basic health care information.”

In other words, let’s not create a tower of Babel just because IT tools exist that will let us. There’s enough failure-to-launch across the medical-care sector now: forests of paper records that are a bear to manage, much less share; HIPAA standing like Colossus over every single one of those sheets of paper; and the rising tide of ‘perfect EMR solutions’ that have been developed in the last few years.

There is no ‘perfect solution’ – what’s required is that healthcare realize that it’s an IT business, just as every other commercial sector has come to realize over the last decade.

“…many health care professionals still think of health IT as a compartmentalized function within health care organizations. But health IT has increasingly become the glue between and across all health care supply chain, care delivery and financing enterprises. In the past, it was enough for health IT to facilitate information exchange inside organizations – in which case a proprietary system would do – but we now expect information to be sent and received seamlessly, independent of platform, including over the Internet. Most of the currently dominant EHR technologies don’t even begin to get us there.”

As someone who has recent experience as a patient managing cancer treatment, the idea of having my records securely available to any medical practitioner in the U.S. via the internet sounds like Utopia. An achievable Utopia, if the incoming administration listens to the rising chorus of voices asking for exactly that.

Add yours to the chorus.

That’s my story, and I’m stickin’ to it…

Firehose of healthcare cost resources

By healthcare industry, healthcare price transparency

caduceus dollar sign scaleI attended the 2nd edition of the bill conference in Richmond VA today (for the record, that’s Saturday, April 6, 2013), and wound up kicking off the talks with what’s become my core topic: #howmuchisthat, healthcare edition. That link goes to the hashtag’s home on Symplur, the healthcare hashtag registry that’s also a veritable time-sink of terrific healthcare thought leadership. Including healthcare data visualization. You’re welcome.

Why is this a topic I care so much, and know so much, about? I believe that in all the hot air that’s been expended in the discussion about healthcare and healthcare reform in the US – and boy, howdy, is that some hot air! – very little shrift is given to how consumers (commonly called “patients”) can effect grassroots change themselves. The firehose below takes a wander through the history of US healthcare, particularly from the cost angle, and resources that the average human can use to start figuring out, ahead of time, how to assess the value (medical and fiscal) of their healthcare options.

Here’s the firehose.

Steve Brill’s epic TIME piece, Bitter Pill  pack a lunch, it’s the longest article TIME has ever published

My take on where Brill missed the mark on his “fix this mess” recommendations

A Feb. 12 post that raises Brill’s issue in what I think of as a great-minds-thinking-alike synergy

My health econ guru Uwe Reinhardt’s Chaos Behind a Veil of Secrecy article in January 2006 edition of Health Affairs

A post that includes intel on the RUC and the LA Times piece – both of which I mentioned in my verbal firehose

A NY Times story on the unintentionally hilarious 2013 report in JAMA (Journal of the American Medical Assn.) on the wide disparity in pricing for hip replacements in the US – the RUC is an AMA committee!

Society for Participatory Medicine $30/year, very passionate and engaged membership which is driving real change

ClearHealthCosts.com, NY startup that’s crowdsourcing healthcare costs

Costs of Care, a 501(c)3 dedicated to helping patients drive down healthcare costs

Leapfrog Group’s Hospital Safety Score database

AHRQ (Agency for Health Research and Quality), part of the US Dept. of Health & Human Services

My 1st Disruptive Women in Health Care post, wherein I make some recommendations about break/fixing the health insurance model in the US (and yes, its headline is totally a shout-out to Jonathan Swift)

A year-later post from the Mighty Mouth blog with some additional suggestions on that break/fix, and why not doing it could be the hidden killer of the US job market