Data-miners unite in Maine to block ‘opt-out’ Rx law

The prescription drug data-mining industry opened yet another legal battlefront, this time in Maine, where no less than six firms are involved in a lawsuit to block a state law that would allow physicians, nurses and other prescribers to “opt out” of having their prescription drug information used for detailing and other pharmaceutical marketing purposes.

Monday was the first day of hearings before U.S. District Court Judge John Woodcock Jr. in Bangor on the request for an injunction filed by the data-miners in August. They are asking to have the Maine Prescription Restraint Law declared unconstitutional. Maine Attorney General Steven Rowe is named the defendant and is arguing in support of the law.

“Legislators in Maine and elsewhere are concerned about the high price of prescription drugs, the role of pharmaceutical marketing in rising drug prices and patient-privacy issues related to prescription data,” said Maine State Rep. Sharon Treat.

{The newest battle in the data miners’ war to continue illegal unfettered access to every American’s prescription records opened today in Maine. The story mentions Patient Privacy Rights’ new Campaign for Prescription Privacy. No one should be able to access your prescription or health records without your informed consent—for any reason.”~Dr. Deborah Peel, Patient Privacy Rights)

Absolute Power: The Eist Case

“And remember, where you have a concentration of power in a few hands, all too frequently men with the mentality of gangsters get control. History has proven that. Power tends to corrupt, and absolute power corrupts absolutely.” So wrote Lord Acton in 1887in his famous dictum.
One hundred and twenty years later, this sentiment reverberates throughout the opinion written by Judge Deborah S. Eyler of the Maryland Court of Special Appeals. The unanimous ruling in favor of Dr. Harold I. Eist in Maryland State Board of Physicians v. Harold I. Eist, M.D., is the fifth decision in support of his stand for patient confidentiality and professional ethics.
In more than 5 years of litigation, an administrative law judge (twice), two separate Maryland circuit judges, and now three appellate judges have held that the prosecution of Dr. Eist was unfounded.
The board’s attempt to discipline Dr. Eist arose out of a bitterly contested divorce and custody battle in which he was the treating psychiatrist for three members of the family (the wife and two of the children). The father, an attorney, had complained to the board that Dr. Eist was overmedicating these three patients and that Dr. Eist had behaved rudely toward him.
In keeping with its policy, the board automatically demanded the entire charts on all three patients. It later became clear that the board was prepared to comply with the father’s demand that the charts be turned over to him.
{“More on the Dr. Eist’s defense of his patients’ rights to control access to their sensitive mental health records.”~Dr. Deborah Peel, Patient Privacy Rights}

Family doctors to shun national database of patients’ records

Nearly two-thirds of family doctors are poised to boycott the government’s scheme to put the medical records of 50 million NHS patients on a national electronic database, a Guardian poll reveals today.

With suspicion rife across the profession that sensitive personal data could be stolen by hackers and blackmailers, the poll found 59% of GPs in England are unwilling to upload any record without the patient’s specific consent.

Three-quarters of family doctors said medical records would become less secure when they are put on a database that will eventually be used by NHS and social services staff throughout England. Half thought the records would be vulnerable to hackers and unauthorised access by officials outside the NHS. A quarter feared bribery or blackmail of people with access to the records and 21% suspected that social services staff would not adhere to the confidentiality rules.

The poll of more than 1,000 doctors was conducted by Medix, a healthcare online research organisation previously used by the Department of Health to test medical opinion. It found GPs are increasingly concerned about the department’s plan to automatically upload the records of everyone who does not register an objection.

{59% of British family doctors are unwilling to upload any medical records into the national health service (NHS) database without consent. And British consumers have the right to opt-out of having their records uploaded into the NHS database. In the US, only 20% of doctors even use electronic records systems in their offices compared with 100% of British doctors. But US consumers have no rights to control or stop disclosures of their personal health data from doctors’ offices or other places that hold or store their data. Americans’ electronic health records can be data mined, used, or sold by over 4 million health-related businesses and government agencies. Clearly today US doctors and patients are far less aware of the privacy risks posed by electronic health systems than doctors and patients in the UK. ~ Dr. Deborah Peel, Patient Privacy Right}

My Genome, Myself: Seeking Clues in DNA

The exploration of the human genome has long been relegated to elite scientists in research laboratories. But that is about to change. An infant industry is capitalizing on the plunging cost of genetic testing technology to offer any individual unprecedented — and unmediated — entree to their own DNA.
For as little as $1,000 and a saliva sample, customers will be able to learn what is known so far about how the billions of bits in their biological code shape who they are. Three companies have already announced plans to market such services, one yesterday.
Offered the chance to be among the early testers, I agreed, but not without reservations. What if I learned I was likely to die young? Or that I might have passed on a rogue gene to my daughter? And more pragmatically, what if an insurance company or an employer used such information against me in the future?
But three weeks later, I was already somewhat addicted to the daily communion with my genes. (Recurring note to self: was this addiction genetic?)
For example, my hands hurt the other day. So naturally, I checked my DNA.
Was this the first sign that I had inherited the arthritis that gnarled my paternal grandmother’s hard-working fingers? Logging onto my account at 23andMe, the start-up company that is now my genetic custodian, I typed my search into the “Genome Explorer” and hit return. I was, in essence, Googling my own DNA.
{Amy Harmon rightfully worries that insurers and employers will use her genetic data, but she gets her DNA tested anyway. It is irresponsible for the NY Times to put this story on the front page and not report on the fact that today Americans have NO control over access to their personal health information—including DNA testing.  HIPAA authorizes over 4 million health-related businesses and government agencies to snoop in our electronic health records and sell them without notice or consent. And Congress has yet to restore our long-standing rights to privacy and to control access to our health information. Just last week, Senators Kennedy, Enzi, Clinton, Hatch, and Obama tried to rush a bill through the Senate to build a national electronic health system where consumers have no control over personal health information. They say privacy can be added later. But re-designing technology to guarantee that consumers give informed consent before data is used is nearly impossible and prohibitively expensive.  Privacy simply has to be built into electronic health systems up front. It is foolish to get tested when there is literally no way to stop your genetic information from being used by insurers and employers. Why endanger your child’s future? Most Americans will not participate in a health system that allows their sensitive health information to be used against them. Navigenics, DeCODE Genetics, and 23andMe can all legally sell our genetic data. No laws or rights prevent corporate use of the most sensitive information on Earth: our DNA and genomes.~Dr. Deborah Peel, Patient Privacy Rights}

Protecting our privacy from federal bureaucrats

Privacy has always been important to Texans – from government officials’ snooping to citizens choosing to be anonymous.
Privacy is a fundamental right in our state’s common law and in our state constitution. That means the government cannot trump or invade our privacy without a compelling state interest to do so – not just any reason, but a compelling reason – and the government has no other alternative available to get the information it claims to need.
That is why both the Fourth Amendment to the U.S. Constitution and the Texas Constitution require probable cause and a warrant from a court, except in an emergency, to intrude upon our privacy.
Since frontier times, Texans have cherished and insisted on their privacy and their anonymity. For Texans, not only was this part of rugged individualism and innate distrust of government, but it was part of their desire to start over in their lives and live the way they wanted.

Wired for Health technology bill stalled in Senate

A comprehensive health technology bill that was expected to pass the Senate this week has instead gone back to federal lawmakers for more tinkering, according to congressional sources and advocacy groups.
The Wired for Health Care Quality Act, sponsored by Sen. Edward Kennedy (D-Mass.) and backed by a trio of other influential lawmakers, failed in two attempts to get “hotlined” this past week. “Hotlining” a bill is a congressional maneuver that allows for quick passage and usually is an indication that it has the support of the entire Senate.
A Kennedy spokeswoman would only say that negotiations over the bill are continuing. She declined, however, to describe the nature of those negotiations.
But Deborah Peel, a psychiatrist and founder of the Patient Privacy Rights Foundation, assailed the legislation, saying that it fails to give vital protections to the one group that needs it the most—everyday Americans. Peel denounced the push for quick passage as “bully tactics” and admonished Kennedy and other senators for trying to do so.
“The only possible thing we’d support is that the bill (ensures) that every American has the right to health information privacy,” Peel said. “And the definition of that is that Americans control access to their personal health information. That’s the minimal acceptable language for patient privacy rights.”
{Thanks to the leadership of Senator Patrick Leahy of Vermont backed up by powerful grassroots efforts to save privacy, Senators Kennedy, Clinton, Enzi, Hatch, and Obama could not push their bill through the Senate this week on unanimous consent. Their bill, known as “Wired,” wipes out Americans’ rights to control access to the most sensitive information on Earth: personal health records. America needs a national electronic health system, but it should be built the right way using ‘smart’ technology and ‘smart’ laws to strengthen and enhance our traditional rights to privacy and the control of access to our health data. With today’s technology, there is no rationale to build an electronic health system without patient privacy protections, unless the objective is to sell the identifiable health records of the patients to the billion-dollar data mining industries. ~ Dr. Deborah Peel, Patient Privacy Rights}

Patient Privacy Is Given A Second Chance In The Senate

The expected hotlining (rushing legislation through the Senate with minimal or no debate) did not take place on S. 1693, the Wired For Quality Health Care Act sponsored by Senator Edward M. Kennedy (D-MA). Right now, the Senate Health, Labor, Education and Pensions Committee is involved in negotiations with the Senate Finance Committee over WIRED. However, once those negotiations are completed, the bill could very well be hotlined.

Privacy advocates are concerned that WIRED does not include adequate patient privacy protections upfront.

WIRED would authorize the Electronic Health Information Network.

Senator Patrick Leahy (D-VT), who understands the need for protecting patient privacy, is working to attach parts of his more privacy friendly S. 1814, the Health Information Privacy and Security Act. That also helped to forestall the Senate’s hotlining of WIRED.

Here is one important issue: Wired For Health Care Quality needs to ensure adequate consumer representation (not a token member) on the Public-Private Partnership that would be created to oversee the implementation of the EHIN

Certification advancing at faster rate than last year

Certification of healthcare information technology is advancing at a faster rate than last year, according to Mark Leavitt, chair of the Certification Commission for Healthcare Information Technology. Market acceptance of certification has increased, Mark Leavitt said.
Last year in the first four quarters of the Commission’s existence, it certified about 10 percent of the ambulatory healthcare IT product market per quarter. Now, in certifying the hospital market, the commission has so far certified six inpatient products out of 24 possible vendors. “This is about a quarter of the inpatient market, so we are ahead of last year,” said Mark Leavitt.
At a meeting hosted by the Department of Health and Human Services Monday, HHS Secretary Michael Leavitt praised CCHIT’s leadership. “We are making serious progress here and in large measures,” the secretary said.
Mark Leavitt, who gave a report before the HHS American Health Information Community, commended the six vendors recently certified for inpatient electronic health record products for  stepping up and being leaders. “This is a tough test we asked them to pass,” he said. “The test actually drilled deep. We had six applicants and all six passed so I can assure you that they prepared long and hard.”
{Comment: “It’s a sad day when a consumer representative praises a process to certify electronic health technology products that deny consumers control of personal health information. Regarding the Certification Commission for Healthcare Information Technology (CCHIT) process for certifying electronic medical records, Nancy Davenport-Ennis said, “Thank you for keeping the patient at the center of your universe.”  CCHIT-certified EHRs (electronic health records) are not held to any standards of privacy—ie consumer control of access to data. CCHIT has really placed consumers at the center of the bulls-eye for data mining. CCHIT certifyies products that actually violate patients’ privacy rights under strong state and common law and medical ethics. Today, consumers are in GREAT danger because the majority of EHR and PHR products contractually grant vendors ownership and/or use of the data. Consumers should ask hospitals and clinics: Does your electronic record system give ownership and use of the data to the technology vendor who built your system? Think about it—it’s outrageous for consumers to have to worry about who is stealing their health information when they are sick.”~ Dr. Deborah Peel, Patient Privacy Rights}

Patient privacy rules said to hinder studies

A federal patient privacy rule has had a chilling effect on medical research, making it tougher to recruit patients and use their health records, the first national survey on the topic suggests.

Two-thirds of the more than 1,500 epidemiologists surveyed said the Health Insurance Portability and Accountability Act, or HIPAA, has made their research more difficult.

The privacy rule has stymied important research, said Dr. Roberta Ness of the University of Pittsburgh, who led the survey. One in nine researchers said they had abandoned a research idea because they thought it wouldn’t be approved because of HIPAA.

A Pittsburgh colleague of Ness’s said enrollment in a study on preeclampsia, a pregnancy complication, dropped from eight women a week to one because of HIPAA. Researcher Nina Markovic said they weren’t allowed to look at patient information and recruit women only for the preeclampsia study. Instead, clinic staff had to ask patients to join a registry that gave all researchers access to their medical charts.

Eventually, the researchers reached a compromise with the hospital that increased the recruitment rate to four women per week.

{Researchers continue to press for access to the nation’s health information without consent, even though the public strenuously objects only 1% would allow open access to all their health information without consent (See Westin survey Oct 07). Access to personal health information without permission violates state and common law, medical ethics and research codes of ethics. There are an infinite number of potential users of our very sensitive health information, some good, some bad—–but according to the law and ethics, they need to ASK us first~Dr. Deborah Peel, Patient Privacy Rights}

Government seeks to redefine privacy

A top intelligence official says it is time people in the United States changed their definition of privacy.
Privacy no longer can mean anonymity, says Donald Kerr, a deputy director of national intelligence. Instead, it should mean that government and businesses properly safeguards people’s private communications and financial information.
Kerr’s comments come as Congress is taking a second look at the Foreign Surveillance Intelligence Act.
Lawmakers hastily changed the 1978 law last summer to allow the government to eavesdrop inside the United States without court permission, so long as one end of the conversation was reasonably believed to be located outside the U.S.