More on medical records privacy

News this past week is giving more hints of possible abuses and misuses of government electronic medical record databases and of our personal health information ... in the name of public health and safety.

As we know, the U.S. Department of Health and Human Services is working on policies for how the government can collect, use and sell our electronic medical records without our informed consent. We’ve also seen how little the HIPAA (Health Insurance Portability and Accountability Act) actually protects the privacy of our medical records, including pharmacy records, and how our personal information can be used by the government for just about any purpose it decides.

This knowledge will probably give a more cautious perspective for most readers of this first story, as compared to the uncritical account reported by CNN.

Patients prescribed medications

Dr. Mark McClellan, former commissioner of the FDA and former administrator for the Centers of Medicare and Medicaid Services, spoke this week to biotech executives. He talked about the new bill passed by Congress in September — the FDA Amendment Act of 2007 — that will create a vast new database of pharmaceutical drug patients by 2012. A much larger database he said is needed to help detect safety issues with prescription drugs. As CNN Money reported:

McClellan said major health care organizations such as eHealth Initiative, Partners Healthcare and Kaiser Permanente will coordinate with insurers like Unitedhealth Group and Wellpoint, Inc. to gather and collate the data from patients....

“If [all members of the American health care system] work together and follow the same rules (in how they define adverse events and how they use the data) then you've got tens of millions (of people) in the database," said McClellan

What other types of databases might governmental agencies create for purposes of public health and welfare? Besides the HIV-positive and diabetes databases we’ve already examined, there appear growing movements to create databases of citizens’ mental health information. The slippery slope begins with justifying these as necessary for public safety and law enforcement.

Adults diagnosed with mental health problems

Yesterday, ABC News revealed that 32 states have voluntarily turned over to the Justice Department the mental health records on their citizens without their permission or knowledge, and another 10 states are considering legislation to allow them to share mental health information with the government without court orders. The records are for the “Mental Defective File” of the FBI, under its National Instant Criminal Background Check System.

As ABC reports, it’s “part of efforts to keep mentally disturbed people from purchasing firearms” and prevent another Virginia Tech incident, which may sound laudable at first glance. The database has grown to nearly 400,000 people and includes anyone who’s ever been deemed to be mentally troubled, including veterans who may have once suffered with post-traumatic stress disorder. The Chicago Tribune reported today that citizens and veterans groups are opposing this Mental Defective File because there is no ability or due process for someone to challenge or get their name removed from the list.

This legitimate concern is significant for any government medical database. Mistakes are common in medical records, Dr. Carolyn McClanahan said today in the Lansing, Michigan news. Stress over a specific situation could be noted on your chart, for instance, as ‘anxiety’ and be seen by an outside entity as a mental health issue, and that mistake could result in being denied insurance or charged higher premiums. Or, a problem that’s been resolved could follow you forever.

Growing children and young adults

Even more difficult to follow, a November 7th press release from SAMHSA (the Substance Abuse and Mental Health Services Administration of the HSS) revealed that Congress is now looking at child mental health as a societal and public health issue.

It is recommending the development of an “assessment and accountability system” for purposes of identification, prevention and treatment of child mental health issues, addictions and substance abuse. A 67-page report, Promotion and Prevention in Mental Health: Strengthening Parenting and Enhancing Child Resilience, was prepared by Center for Mental Health Services (CMHS) at the request of a Senate subcommittee. SAMHSA Administrator Terry Cline, Ph.D., said the report’s recommendations “advance the growing medical consensus that mental health needs must be aggressively addressed early in life in order to fully promote the Nation’s public health interests.”

As Psychiatric Services reported, the rationale for the public health tactic focuses on factors that may lead to a child’s “resilience.” The report identifies programs to address parents, adults, schools, neighborhoods, friends and other factors on behalf of those national public health interests. The report concludes with eight broad-based recommendations for federal, state and local collaboration to facilitate screening and prevention programs. These include communicating the economic and social benefits of prevention, family and workforce interventions, and a broad assessment and accountability system.

The following week, another SAMHSA press release announced a new report finding that young people with depression are at higher risk for “initiating substance use including cigarette smoking, and use of alcohol or illicit drugs.” The findings were based on the largest national database of its kind on substance use and health, one few consumers probably realize even exists. According to the press release:

[This report defined] a major depressive episode as a period of two weeks or longer during which there is depressed mood or loss of interest or pleasure and the presence of at least four other symptoms that reflect a change in functioning. These include problems with sleep, eating, energy, concentration and self-image. This definition is consistent with the one used by the American Psychiatric Association.

This could easily describe many teenagers at some point and time, meaning a zealous public health screening initiative could put countless young people into the government database, label them with a mental health problem, monitor their behaviors, and subject them to interventions or prevention programs that may or may not be needed, desired or best for them as determined by their healthcare provider and parents, or of proven efficacy. The report went on to say:

The report is also notable because of the size of the database -- nearly 135,000 interviews with persons aged 12 or older, including almost 45,000 young adults – and it was conducted during the course of the 2005 and 2006 NSDUH [National Survey on Drug Use and Health] surveys. This database is one of the largest and most detailed of its kind.

Employees

Wednesday, the American Psychiatric Foundation issued a press release announcing that, as part of its efforts to”advance effective employer approaches to mental health,” its Partnership for Workplace Mental Health has launched Employer Innovations Online, a web-based, searchable database that profiles employers’ policies, programs and practices for addressing mental health, including screening and interventions.

As the American Psychiatric Association President Carolyn Robinowitz, M.D., explains, “The Partnership focuses on helping employers understand the business case for addressing mental health at the workplace.”

The Partnership coordinator said that “not addressing mental health is costly.” Employers now appear another entity with a “need to know” and building a case for access to mental health records.

Under HIPAA, our personal health information can be gathered into government databases under all sorts of pretenses and used in countless ways. Calling HIPAA a Privacy Protection Act doesn’t make it so. However, unlike the web, there are few reports in mainstream media of drawbacks or potential problems of a national health databases, or of the objections of consumers and medical professionals.

We are predominately given one side: the “Benefits of Electronic Health Records,” as the Wall Street Journal headlined yesterday, saying:

A sizable majority of Americans believe electronic medical records have the potential to improve U.S. health care and that the benefits outweigh privacy risks, according to a new Wall Street Journal Online/Harris Interactive poll.

Opinion polls are, of course, the most common marketing tactic used by public relations firms to sell an idea and shape public opinions by trying to convince us of something’s popularity. How questions are worded and ordered, who is polled and how the answers are interpreted can create any bandwagon effect a pollster may desire. This Harris Poll is an online poll conducted for marketing clients and the participants are members who sign up and get points and cash rewards for answering the surveys. In this case, the question concerning “if benefits outweighed the risks” was asked at the end of the survey, after multiple questions raising possible benefits of electronic databases, without mention of potential drawbacks. Even so, most of those who answered favorably used electronic medical records.

That very same poll, however, even as the questions were asked and answered, could also have been interpreted as revealing that electronic medical records aren’t popular or used by the vast majority of Americans, that only 2% of adults use electronic medical records and only 1 in 5 doctors maintain electronic patient records.

There is, however, a large movement in England getting media coverage with a very different perspective on electronic databases, their potential misuses and privacy concerns. Nearly two-thirds of family doctors there are boycotting the government’s plan to put the medical records of 50 million NHS patients on its national database, the Guardian reported last week. Growing numbers of general practitioners are unwilling to upload any file without their patient’s specific consent. The report goes on to say:

Family doctors to shun national database of patients' records

...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....

This high level of scepticism came in spite of months of campaigning by Connecting for Health, the NHS's IT procurement agency, to persuade doctors that the “summary care record" scheme would save lives.... One GP told the pollsters: “Patients' confidential records will undoubtedly be at risk in the brave new world ...Another said: “Our current record confidentiality has been breached by a local primary care trust manager and we only found out by accident. I cannot trust the security of a national scheme." ....

If consumers and healthcare professionals were given all sides of the issue, how many would really want the government, insurers and their employers to know everything about them?