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February 05 2014

TERRA 902: Living in Pele's Paradise (Part 2)

A famous eruption of Kilauea Volcano, Hawai'i, started in 1959 with spectacular fountains of lava and ended in 1960 with the tragic destruction of Kapoho village. This movie (part 2 of 2) shows how the scientific and social lessons of that eruption affect modern research and monitoring of the volcano. This film was selected for display in the Science Storytelling Workshop and AGU Cinema at the American Geophysical Union Fall Meeting in December 2013. Produced by Julia Sable.

January 24 2014

TERRA 901: Living in Pele's Paradise (Part 1)

A famous eruption of Kilauea Volcano, Hawai'i, started in 1959 with spectacular fountains of lava and ended in 1960 with the tragic destruction of the village of Kapoho. This movie (part 1 of 2) tells the story of the eruption through eyewitness accounts and archival film footage, and examines the scientific and social lessons that still affect Hawai'i today. This film was selected for display in the Science Storytelling Workshop and AGU Cinema at the American Geophysical Union Fall Meeting in December 2013. Produced by Julia Sable.

August 21 2012

Hawaii and health care: A small state takes a giant step forward

Knots by Uncle Catherine, on FlickrIn an era characterized by political polarization and legislative stalemate, the tiny state of Hawaii has just demonstrated extraordinary leadership. The rest of the country should now recognize, applaud, and most of all, learn from Hawaii’s accomplishment.

Hawaii enacted a new law that harmonizes its state medical privacy laws with HIPAA, the federal medical privacy law. Hawaii’s legislators and governor, along with an impressive array of patient groups, health care providers, insurance companies, and health information technologists, agreed that having dozens of unique Hawaii medical privacy laws in addition to HIPAA was confusing, expensive, and bad for patients. HB 1957 thus eliminates the need for entities covered by HIPAA to also comply with Hawaii’s complex array of medical privacy laws.

How did this thicket of state medical privacy laws arise?

Hawaii’s knotty web of state medical privacy laws is not unique. There are vast numbers of state health privacy laws across the country — certainly many hundreds, likely thousands. Hawaii alone has more than 50. Most were enacted before HIPAA, which helps explain why there are so many; when no federal guarantee of health privacy existed, states took action to protect their constituents from improper invasions of their medical privacy. These laws grew helter-skelter over decades. For example, particularly restrictive laws were enacted after inappropriate and traumatizing disclosures of HIV status during the 1980s.

These laws were often rooted in a naïve faith that patient consent, rather than underlying structural protection, is the be-all and end-all of patient protection. Consent requirements thus became more detailed and demanding. Countless laws, sometimes buried in obscure areas of state law, created unique consent requirements over mental health, genetic information, reproductive health, infectious disease, adolescent, and disability records.

When the federal government created HIPAA, a comprehensive and complex medical privacy law, the powers in Washington realized that preempting this thicket of state laws would be a political impossibility. As every HIPAA 101 class teaches, HIPAA thus became “a floor, not a ceiling.” All state laws stricter than HIPAA continue to exist in full force.

So what’s so bad about having lots of state health privacy laws?

The harmful consequences of the state medical privacy law thicket coexisting with HIPAA include:

  • Adverse patient impact — First and foremost, the privacy law thicket is terrible for individual patients. The days when we saw only doctors in one state are long gone. We travel, we move, we get sick in different states, we choose caregivers in different states. We need our health information to be rapidly available to us and our providers wherever we are, but these state consent laws make it tough for providers to share records. Even providing patients with our own medical records — which is mandated by HIPAA — is impeded by perceptions that state-specific, or even institution-specific, consent forms must be used instead of national HIPAA-compliant forms.
  • Harmful to those intended to be protected — Paradoxically, laws intended to protect particular groups of patients, like those with HIV or mental health conditions, now undermine their clinical care. Providers sending records containing sensitive content are wary of letting complete records move, yet may be unable to mask the regulated data. When records are incomplete, delayed, or simply unavailable, providers can make wrong decisions and patients can get hurt.
  • Antiquated and legalistic consent forms and systems — Most providers feel obliged to honor a patient’s request to move medical records only in the form of a “wet signature” on a piece of paper. Most then insist that the piece of paper be moved only in person or by 1980s-era fax machines, despite the inconvenience to patients who don’t have a fax machine at hand. HIPAA allows the disclosure of health information for treatment, payment, and health care operations (all precisely defined terms), but because so many state laws require consent for particular situations, it is easier (and way more CYA) for institutions to err on the side of strict consent forms for all disclosures, even when permitted by HIPAA.
  • Obstacles to technological innovation and telemedicine — Digital systems to move information need simplicity — either, yes, the data can move, or no, it cannot. Trying to build systems when a myriad of complex, and essentially unknowable, laws govern whether data can move, who must consent, on what form, for what duration, or what data subsets must be expurgated, becomes a nightmare. No doubt, many health innovators today are operating in blissful ignorance of the state health privacy law thicket, but ignorance of these laws does not protect against enforcement or class action lawsuits.
  • Economic waste — As taxpayers, the state legal thicket hurts us all. Redundant tests and procedures are often ordered when medical records cannot be timely produced. Measuring the comparative effectiveness of alternative treatments and the performance of hospitals, providers, and insurers is crucial to improving quality and reducing costs, but state laws can restrict such uses. The 2009 stimulus law provided billions of dollars for health information technology and information exchange, but some of our return on that national investment is lost when onerous state-specific consent requirements must be baked into electronic health record (EHR) and health information exchange (HIE) design.

What can we learn from Hawaii?

Other states should follow Hawaii’s lead by having the boldness and foresight to wipe their own medical privacy laws off the books in favor of a simpler and more efficient national solution that protects privacy and facilitates clinical care. Our national legal framework is HIPAA, plus HITECH, a 2009 law that made HIPAA stricter, plus other new federal initiatives intended to create a secure, private, and reliable infrastructure for moving health information. While that federal framework isn’t perfect, that’s where we should be putting our efforts to protect, exchange, and make appropriate use of health information. Hawaii’s approach of reducing the additional burden of the complex state law layer just makes sense.

Some modest progress has occurred already. A few states are harmonizing their laws affecting health information exchanges (e.g., Kansas and Utah). Some states exempt HIPAA-regulated entities subject to new HITECH breach requirements from also having to comply with the state breach laws (e.g., Michigan and Indiana). These breach measures are helpful in a crisis, to be sure, by saving money on wasteful legal research, but irrelevant from the standpoint of providing care for patients or designing technology solutions or system improvements. California currently has a medical law harmonization initiative underway, which I hope is broadly supported in order to reduce waste and improve care.

To be blunt, we need much more dramatic progress in this area. In the case of health information exchange, states are not useful “laboratories of democracy“; they are towers of Babel that disserve patients. The challenges of providing clinical care, let alone making dramatic improvements while lowering costs, in the context of this convoluted mess of state laws, are severe. Patients, disease advocacy groups, doctors, nurses, hospitals, and technology innovators should let their state legislators know that harmonizing medical privacy laws would be a huge win for all involved.

Photo: Knots by Uncle Catherine, on Flickr

November 20 2008

TERRA 455: Rising Tide PART TWO

How will the coral reefs, monk seals, native plants, and honeycreepers of Hawai'i deal with climate change? Local researchers working in the island chain's stunning national parks tell us their concerns for wildlife, key habitats, and cultural resources.

November 14 2008

TERRA 454: PREVIEW Rising Tide

How will the coral reefs, monk seals, native plants, and honeycreepers of Hawai'i deal with climate change? Local researchers working in the island chain's stunning national parks tell us their concerns for wildlife, key habitats, and cultural resources.
TERRA 454: Rising Tide

How will the coral reefs, monk seals, native plants, and honeycreepers of Hawai'i deal with climate change? Local researchers working in the island chain's stunning national parks tell us their concerns for wildlife, key habitats, and cultural resources.

February 11 2008

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