Colorado’s APCD [All Payer Claims Database] is a disaster waiting to happen and makes a mockery of transparency, which is intended for citizens to watch government not the other way around. Among civil libertarians, the Independence Institute was the lone defender of your medical privacy.

Fortunately for Coloradans, the database is behind schedule.  It was supposed to be operational by summer 2011. That has been delayed until December 2011. Enjoy your medical privacy while it lasts. As supporters claim, they cannot “manage” your health care, unless they can “measure” it.

Read her whole post: Spotlight on your private medical records.

To my understanding, there’s a way to opt-out of this database. See my post: Colorado’s health “information exchanges” threaten your medical privacy.

On June 9 the Maine legislature voted to allow individuals to opt-out of having their medical records shared in a health information exchange (HIE). Although initially introduced with a consent requirement, the bill was passed and signed into law with an opt-out provision instead.

Opt-out, or dissent, laws allow data collection and sharing unless individuals remove themselves from the system; the burden is on patients. Consent laws prohibit all data collection and sharing unless individuals choose to opt into the system; the burden is on doctors and facilities. Last year during a meeting of the Health Information Technology Policy Committee, Judy Faulkner from Epic Systems said the policy about opt-in versus opt-out “should be based on evidence, not on the ‘vocal minority’ of privacy activists,” according to the Westside Public Relations blog.

Maine’s new law requires all health care practitioners and facilities to provide each patient the following:

• Information on the state-designated statewide HIE, including risks and benefits of participation;
• A description of how and where to obtain more information about the HIE and how to contact it;
• An opportunity for the patient to decline participation in the HIE, and
• A declaration that the practitioner and facility may not deny treatment based solely on the provider’s or patient’s decision not to participate in the HIE.

The new law also requires the HIE to establish a secure website that allows patients to opt out, consent to participate if they had previously opted out, and request information on who has accessed their records and when.

Maine joins other states in allowing patients to opt out of health information exchanges, including Colorado, Idaho, Kentucky, Nebraska, New Hampshire, Ohio, Oregon, and South Carolina. Tennessee’s HIE Operational Plan allows providers to decide whether to use the opt-in or the opt-out approach. Most have elected to enroll their patients without their express consent. Vermont switched from opt-out to opt-in.

Minnesota has a partial opt-out provision. The HIE is allowed to use a record locator service (RLS) to electronically locate and list the location of the various medical records of each patient without patient consent. However, under state law, health care providers may not view the computerized list of locations without patient consent. Nothing in state law requires that consent to be written or informed.

Sources:

“An Act To Ensure Patient Privacy and Control with Regard to Health Information Exchanges,” (Public Law, Chapter 373), State of Maine, Signed June 16, 2011.

“EHR Policy: Opt-In or Opt-Out,” Westside PR Blog, July 22, 2010.

“Opt-in Versus Opt-out: Consent Models for Health Information Exchange through Missouri’s Statewide Health Information Exchange Network,” Missouri Department of Social Services, DRAFT 4-14-10.

Tennessee Health Information Exchange: Operational Plan, Version 2.0 (Submitted to Office of the National Coordinator for Health Information Technology (ONCHIT) June 7, 2010), p. 124.

” Participating Health Care Provider Policies and Procedures,” Vermont Information Technlogy Leaders [HIE for Vermont] November 22, 2010.

Minnesota Statutes 144.293, subd. 8, “Record Locator Service.”

* The newsletter is not on the CCHF’s site yet, but will be here.

• House Bill 1330: The All-Payer Database is a Transparency Trojan Horse, by Linda Gorman
• tracking how doctors treat you is the first step toward government’s rewarding and punishing doctors for not practicing according to government’s judgment, rather than their own.

In coming weeks, patients across Colorado will receive letters saying their health care provider is about to join an “information exchange.” More than 800 Colorado providers have signed agreements with the state agency sponsoring the exchanges.

Although many proponents discuss the perceived benefits of health information technology (HIT), missing from the debate is an honest discussion of experiences with actual HIT systems, and the obstacles and pitfalls of poorly designed systems …

There are different forms of HIT — many of which are widespread in the United States.  Electronic medical records (EMRs) are often cited as the technology with the greatest potential to improve quality and reduce costs, but they are not in widespread use.

Installing HIT systems in a physician’s office or hospital is much more complicated than installing software on a computer connected to the Internet:

• Privacy and security risks are a concern due to hackers, identity theft, unauthorized access and corruption (alteration) of patient data.
• Although HIT systems may prevent common errors, they also have the potential to introduce new ones. For instance, overreliance on the accuracy of EMRs can lead to grievous errors if a patient record contains false information.
• But the potential advantage of storing patient records electronically is that, in some cases, distance becomes irrelevant when consulting with a physician. In fact, many concierge and other cash-based physicians already use the telephone and e-mail to communicate with their patients.

As part of its commitment to patient-centered, personalized care, Cancer Treatment Centers of America (CTCA) implemented a system of electronic medical records in March 2008.  CTCA believes there are four primary benefits of this system:

• There is better communication and collaboration across all clinical specialties.
• Tests and treatments are scheduled faster.
• Delivery of patient orders, recommendations and treatment plans is improved.
• Turnaround for test results is faster.

Many HIT proponents support government-imposed HIT, assuming that a plan devised by a few people at the top (such as government officials) will work, even though the plan may not be in the self-interest of those at the bottom (such as physicians) who are required to implement it.  This sort of mandate is especially unlikely to succeed if it provides no incentives for health care providers to adopt and properly use the technology.

Source:  Devon M. Herrick, Linda Gorman and John C. Goodman, “Health Information Technology:  Benefits and Problems,” National Center for Policy Analysis, Policy Report  No. 327, April 1, 2010.

Transparency is about taxpayers being able to watch government, not government watching taxpayers – Paraphrasing Amy Oliver.   Do you want what you discuss with your doctor in a government database?

Part 3 of 3:

This is certainly one of the scarier bills to come out of Colorado politics.

… President Barack Obama said that his administration wants every American to have an electronic health record by 2014, and last year’s stimulus bill allocated over $36 billion to build electronic record systems. Meanwhile, the Senate health-care bill just approved by the House of Representatives on Sunday requires certain kinds of research and reporting to be done using electronic health records. …

In 2005, a California Healthcare Foundation poll found that one in eight Americans avoided seeing a regular doctor, asked a doctor to alter a diagnosis, paid privately for a test, or avoided tests altogether due to privacy concerns. …

n the past five years, according to the nonprofit Privacy Rights Clearinghouse, more than 45 million electronic health records were either lost, stolen by insiders (hospital or government-agency employees, health IT vendors, etc.), or hacked from outside.

Thomas Sowell writes:

With politicians now having not only access to our most confidential records, and having the power of granting or withholding medical care needed to sustain ourselves or our loved ones, how many people will be bold enough to criticize our public servants, who will in fact have become our public masters?

Despite whatever “firewalls” or “lockboxes” there may be to shield our medical records from prying political eyes, nothing is as inevitable as leaks in Washington.

Regarding a related Bill in Colorado, HB 1330 (not law yet) Linda Gorman writes:

Naturally the bill directs that the data be securely stored.

Tell that to the 3.4 million Colorado residents who, as the State Auditor’s Office said in May, 2008, have had their unencrypted personal information sent over the Internet and telephone lines on a daily, weekly, and monthly basis by the Department of Motor Vehicles.

Tell that to the 1.4 million people who had personal information in Colorado’s State Directory of New Hires, the state’s “centralized, confidential, and secure” repository for new hire data reported by employers in the State of Colorado. Their personal data was exposed in 2006 when a desktop computer was stolen from a state contractor processing child support payments for Colorado’s Department of Human Services.

For more information, check out the Institute for Health Freedom’s resources.

What the Bill Does: Gives the Executive Director of Health Care Policy and Financing the power to create a database to collect and store unlimited information on everyone who provides or receives health care in Colorado whether or not the state pays for that health care and whether or not the transaction is a private one.

How the Bill Endangers Colorado Citizens:

1. Because it enables the creation of dossiers on citizens, the bill transfers too much power to state government
2. The metrics discussed in the bill do not exist. The use of poor substitutes will likely increase health care costs and degrade health care outcomes
3. The bill funds the database with money from undisclosed sources with undisclosed agendas that may not be in the best interests of Colorado citizens
4. There is no known way to secure the private information that the state proposes to collect.
5. There is no guarantee that the Commission appointed to study the database issues will have the expertise needed to accurately ascertain its consequences.

For details on each of these points, read Dr. Gorman’s Bill Summary: HB10-1330, the All-Payer Database: A Transparency Trojan Horse.

Update March 4: Also check out this podcast about HB 10-1330 from iVoices.