Beyond the disputed individual mandate of the Affordable Care Act (ACA) requiring citizens to purchase health care insurance, there is another “individual mandate” that assigns a unique identification number to every citizen-patient. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) already required the adoption of a unique identification number for each clinician, called the National Provider Identifier (NPI). This system was established to collect information about each licensed health care provider. Similar to the NPI number for providers, the Simplification Adoption of Operating Rules for Eligibility for Health Plan and Health Care Claim Status Transactions, also from HIPAA, will establish a unique identifier for patients. This national patient number is simply referred to as “Patient Identification” and will be required in order to receive health care services through ACA.
Both NPI and Patient Identification numbers, combined with the requirement that by 2015 medical records held by insurers will be converted into an electronic format, represent key building blocks for both the full implementation of the Electronic Health Record (EHR).
The EHR is not the first national identification system. The Social Security Act was successfully passed in 1936 for the purpose of tracking earnings of individuals for taxation purposes. Since then, there have been other efforts to track more and more information. Under the Bush administration (2005), Congress passed the Real ID Act that uses state driver licenses and ID cards for “official purposes” by Homeland Security, although many states have not complied. As part of the Immigration Reform Act of 2006, the Electronic Employment Verification System (EEVS) requires that all workers carry an identification card to ensure that companies do not hire non-citizens. In April of 2011, President Obama submitted the National Strategy for Trusted Identities in Cyberspace. These proposed guidelines assign a unique Internet Identification Number to users for purposes of enhancing Internet security. But different from these preceding identification efforts, assigning Patient Identification numbers represents an unparalleled incursion into the personal lives of citizen-patients because, rather than being primarily enumerative, this number will provide a means to specifically identify individuals through personal health information.
After recognizing the importance of health record security and privacy, Secretary of Health and Human Resources (HHS) Kathleen Sibelius said in 2010: “I feel equally strongly that conversion to electronic health records may be one of the most transformative issues in the delivery of health care, lowering medical errors, reducing costs and helping to improve the quality of outcomes.” Secretary Sibelius announced new rules to expand the use of the EHR. These new rules were in response to the American Recovery and Reinvestment Act (2009) that defines incentive payments for providers who demonstrate “meaningful use” of EHR technology, and penalties for providers who do not.
If the secretary feels “equally strongly” about health record security and privacy versus the conversion to electronic health records, it is not clear why she would then be willing to move forward with implementation of the EHR, knowing that the EHR jeopardizes patient confidentiality. Further, if the EHR is transformative in a positive sense, it is not clear why it would be necessary to adopt a carrot-stick approach with providers; until it is realized that without providers' conveying data to insurance companies and government depositories, there can be no EHR.
APSA legislative counsel, James Pyles, has noted that EHRs have not produced the promised results that were the basis for the legislation. He said, “Health Information Technology (HIT) legislation was passed on the representation that it would save 100,000 lives a year and $77 billion annually. Studies to date have shown that Health IT has not produced any savings, has added to the cost of health care with expensive systems with expensive security measures, and has not reduced medical errors or saved lives but in fact has added errors.” To the contrary, it appears that electronic health information systems are adding unanticipated costs to the health care delivery system at a time when Congress is contemplating deep cuts in reimbursement for federal programs.
Beside there being little advantage in terms of cost and quality, the infrastructure of the EHR is fundamentally flawed. For every security measure to shield information in a database there is eventually a countermeasure to get around the shield. As a result of Internet
Graham L. Spruiell, M.D., is co-chair of the Committee on Government Relations and Insurance and a member of the Program in Psychiatry and the Law, Beth Israel Deaconess Medical Center, Boston.
hacking and lost or stolen laptops/memory devices, breaches of personal health information (PHI) are skyrocketing. According to data from the Privacy Rights Clearinghouse, from 2005 to July 10, 2011, there were 513 separate breaches in which 20,705,963 patients had their medical records disclosed without their consent. This represents 6.8 percent of the U.S. population (303,256,310). Not everyone in the U.S. population is a patient and many breaches go unreported, so the actual percentage is likely to be much higher. If an individual practitioner were to breach the confidentiality of 6.8 patients for every 100 patients seen, that practitioner would not be permitted to practice.
Pyles has written in a soon to be released analysis of electronic health records over the past 15 years, “Electronic health information systems are the nuclear energy of health reform. They can bring great benefit if carefully used and controlled, and can be costly and produce catastrophic damage if not tightly controlled. Electronic health information systems make it possible, for the first time in the history of medicine, (A) to breach the health information privacy of millions of individuals with the punch of a button; (B) steal health information without having physical access to it (or even be on the same continent); and (C) breach health privacy in a manner that it can never be restored.”
Personal health information contained in EHR is quite detailed and includes demographic profile, ethnicity, height, weight, waist circumference, blood pressure, detection of cognitive impairment, screening schedule for the next 5-10 years, age appropriate preventive services, individual risk factors, and mental health conditions. There is an expectation for practitioners to provide personalized health advice and to promote self-management and wellness including weight-loss, physical activity, smoking cessation, fall prevention, and nutrition. The secretary has the authority to introduce additional data elements as she deems appropriate.
Implementation of the EHR does not represent the first “transformative issue” of this type. In the late 1880s a U.S. Census Bureau employee named Herman Hollerith patented a machine named the Hollerith Tabulator. The Hollerith Tabulator mechanically sorted perforated cards representing numerical data and is considered the first working machine capable of sorting, storing, and cross-tabulating data. The Hollerith Tabulator was used by the United States government to perform its 1890 census with unprecedented speed and accuracy. Besides transforming census taking, the Hollerith Tabulator soon proved to be indispensable in elections and in a variety of business applications and was heralded as a significant innovation.
But just as a chisel can become a bludgeon, an ax can become a battle ax, and farm machinery can become a tank, a useful tool for government census taking and business inventory control can become a weapon of surveillance. In 1910, Hollerith licensed his patents to a new German company, Deutsche Hollerith Maschinen Gesellschaft (DEHOMAG), and the following year sold his own Tabulating Machine Company to a U.S. conglomerate, the Computing-Tabulating-Recording Company (CTR). In 1924, CTR acquired DEHOMAG and renamed itself “International Business Machines” (IBM).
In addition to conducting its census, the Nazi regime began using DEHOMAG's Hollerith Tabulators to compile information on targeted populations. Tabulators were used to regulate the trains that transferred prisoners to concentration camps. Once imprisoned in camps, information was entered into the tabulators about ethnic background, type of worker, and whether the individual was scheduled to be killed or kept alive as a laborer. That number was represented on the punch card and at least in the beginning was tattooed on the prisoner's forearm.
And it was not just the Nazis. Following the declaration of war against Japan, Franklin D. Roosevelt signed an executive order (9066) which authorized the (mis)use of Hollerith Tabulators to surveil and facilitate internment of Japanese-Americans (1943). Although imprisoning Japanese-American citizens differs from the Holocaust in many respects, it does demonstrate that even a so-called enlightened government can be susceptible to “keeping tabs” on its citizens. (The origin of this phrase is unclear but came into parlance in the late 1800s around the time that the Hollerith Tabulator was developed, and means “to keep a close eye on” or “to track.”)
Having a Patient Identification number may seem indispensable in terms of threading the needle of the EHR and expanding a national identification system; but benefits are exaggerated, data is often unreliable, the EHR is fundamentally insecure, and governments have misused such information in the recent past. These facts should give us pause to question this transformation. Secretary Sebelius has the authority to facilitate implementation of the EHR and Patient Identification, but she does not have the authority to compel practitioners to act against their ethical beliefs. If the EHR and Patient Identification are implemented, our government for the first time would have access and the means to regulate and exploit what has heretofore been considered private information belonging to individual citizens.
The most compelling way to maintain confidentiality and preserve trust in the therapist-patient relationship is to avoid using the EHR altogether through private contracting, although this is becoming increasingly impractical; some say impossible.
If information about treatment is disclosed to the EHR, psychoanalysts should consider the following:
Have forthright discussions with patients about what information will be recorded.
Obtain informed consent regarding the EHR and limitations of confidentiality. (Medical, non-criminal, Miranda Warning)
Record the minimal data necessary.
Record sensitive information in “psychotherapy notes,” making sure that this information is kept separate from the rest of the medical record.
If the EHR is inevitable, then it will be important to legally clarify who owns and has authority to regulate information contained in the medical record. According to medical ethical tenets that have existed for over 2,000 years, the patient has been considered to be the putative owner of, not the physical record itself, but information contained in the record which the patient volunteered in order to receive treatment. Before HIPAA, it was the patient's prerogative to disclose or not to disclose, not the agency which collected this information.
To clarify ownership of health information and to preserve confidentiality will require a legal foundation. In terms of transformation, the EHR should be fundamentally redesigned to become patient-centered. Similar to a bank account, the patient (or surrogate) should have exclusive rights to issue PHI from a “personal information account” to trusted recipients only and to be alerted when this information is accessed without authorization. Existing technologies do not require a national patient identification number, do not require practitioners to betray trust and confidence, are not vulnerable to massive breaches or abuse; but would re-establish patient control over health information.
Editor's Note: If you would like the list of references, please contact Graham L. Spruiell at gls@analysis.com.