Friday, January 30, 2009

The true problems in HIT

The experts quoted are correct that cost, interoperability, difficulty of use, work-flow disruption, and lack of proof of safety/effectivenss are good reasons not to spend $20 billion in HIT stimulus money on bad products (the equivalent of buying SUVs instead of hybrids and electric cars).

But Kibbe and Klepper should look beyond their own perspectives to consider the wider context and the real make-or-break issue: what must EHR systems have to ensure the public's trust and willingness to use them?

Of course, doctors must be able to afford, easily use, and know that EHR systems actually work and are effective, but systemic failure is inevitable unless patients trust electronic systems. Today's health IT systems and products are not even close to meeting the public's expectations for control over personal data and and ironclad security.

From the consumer perspective, the worst defects in today's EHR systems are:

1) Patients have no control over the use or disclosure of their personal health information in these systems.

2) Doctors, hospitals, labs, pharmacies, PBMs, insurers, data miners, data aggregators, etc, etc, and software vendors control the disclosure, use, and sale of the nation's personal health information.

3) Most of today's EHR technology is extremely primitive (20-30 years old) and does not comply with patients' longstanding legal and ethical privacy rights:
•most EHRs do not have the functional capacity to segment sensitive records
•human-readable audit trails of disclosures are not required, so patients have no way to know who snooped in their records or where their personal health information has been sent or sold
•the security measures are abysmal. CIO magazine story from 2006 reported that all 850 EHR systems examined could easily be hacked: http://searchcio.techtarget.com/originalContent/0,289142,sid182_gci1273006,00.html

The most important reason not to buy $20 billion dollars worth of dinosaur EHR technology is that consumers will NEVER trust electronic health systems unless they control sensitive personal data and unless the systems have state-of-the-art security to prevent the frequent breaches, losses, and thefts of millions health records.

Until the American public has PROOF electronic systems can be trusted, failure is inevitable. Why not build EHRs and the electronic health system right from the start, rather than spending billions later to rebuild?

Must we repeat the mistakes made in the UK? The NHS system was built without patient control over data. Billions of dollars and many years were wasted before the government realized that forcing patients into an electronic health system that shares data without consent doesn't work.

View the full story referenced

Tuesday, January 27, 2009

Pro-Privacy Will Continue to Grow

More and more genuine consumer pro-privacy groups ---as opposed to privacy-lite, industry-supported, faux consumer organizations---are speaking out to restore privacy in electronic health systems. Support for privacy rights will build and build. There may be set-backs, but we cannot be stopped. See this recent article on Consumer Watchdog supporting patient privacy.

The real reason privacy will win is simple and practical: electronic systems will never be trusted or work unless consumers control personal health information.

In the words of Justice Brandeis: "The right to be let alone is the most comprehensive of rights and the right most valued by civilized men. To protect that right, every unjustifiable intrusion by the government upon the privacy of the individual, whatever the means employed, must be deemed a violation of the [Constitution].” Justice Brandeis 1928.
Olmstead v. United States, 277 U.S. 438, 478, 48 S.Ct. 564, 572 (1928) (Brandeis J., dissenting).

Brandeis dissented from the conventional wisdom of his time. Today we are the dissenters from the CW of our time, but like Brandeis' dissent, ours will prevail.