Regarding your Daily Dose item of Jan. 16, Initiative to offer free e-prescribing: All prescriptions have been converted into electronic data by the nations pharmacies for more than a decade. The real question is: Why werent these long-standing electronic-prescription systems designed to detect errors and save peoples lives in the first place?
The answer is that e-prescription systems were built by and for the benefit of the healthcare industry, not to improve the health of patients. The original purpose of digitalizing prescription records was to use technology to instantly determine whether a medication was covered by a health plan and what an individuals copayment would be. Payers designed the technology to lower their administrative costs and increase efficiency.
Now the National ePrescribing Patient Safety Institute, or NEPSIwhich includes Allscripts Healthcare Solutions, Intel Corp., Dell, Google, Microsoft Corp., Sprint Nextel Corp. and major insurers such as Aetna and WellPointplans to give doctors free software to induce them to write e-prescriptions to detect errors and save lives. This sales pitch is intended to convince the public and doctors that using e-prescriptions is good medicine, while neglecting to mention the harm and risks of using e-prescription systems.
If doctors e-prescribe, they will violate the laws and ethics they are required to uphold by disclosing sensitive patient records through electronic systems that allow e-prescriptions to be reused for purposes other than filling prescriptions. The current e-prescription system was not engineered to obtain patient consent before secondary uses or to segment access to sensitive prescriptions.
It is good news that healthcare industry players such as NEPSI members and the Institute of Medicine are finally proposing ways that prescription data can be used to benefit patients. But NEPSI and the IOM should simultaneously call for e-prescribing systems to be rebuilt to ensure that patients have ironclad control over access to their sensitive e-prescriptions.
More than a decade ago, payers hired data aggregators and data handlers hired to construct the e-prescription system. The businesses they hired, such as pharmacy benefit managers, switching companies and others, realized that identifiable prescription data would be extremely valuable to the pharmaceutical industry, insurers and large employers. These major corporations clamored for access to e-prescription data to use for marketing, medical underwriting and to discriminate against applicants for jobs and promotions.
The billions in revenue generated by selling e-prescription data for secondary uses spawned a huge and mushrooming data-aggregating and data-mongering industry. The result is that the entire nations e-prescriptions are being illegally and unethically accessed and mined daily. Patients have never given consent for these unwanted secondary uses of their e-prescriptions.
IMS Health is just one of a growing number of corporations that derive billions in revenue from the sale of sensitive identifiable e-prescriptions. In 2005, IMS Health reported revenues of $1.75 billion.
In 2006, the national Blue Cross and Blue Shield Association announced its Blue Health Initiative to aggregate and sell the claims, medical and prescription data of all 79 million enrollees to large employers. This database will include far more detail than e-prescription records, making the sales of Blues data worth far more than the billions in revenue from selling e-prescription records alone.
The e-prescription system was built without any regard for the large existing body of state and national laws and ethical standards of medical privacy that require informed consent before medical records can be used or disclosed. Americans have long had the right to medical privacy (the right to control access to their medical records) and naturally expect their prescription records to be private. Most patients have no knowledge that their prescriptions are being used for secondary purposes.
Using sensitive prescription records without patient consent violates the Hippocratic Oath and the American Medical Association Code of Medical Ethics. It is illegal to disclose medical records without informed consent for a specific purpose in every state of the U.S. Who would argue that prescription records are not medical records?
Today, millions of Americans pay cash for prescriptions in a futile attempt to keep their prescription records private. Most of the public believes that the Hippocratic Oath and their doctors are still protecting their records, and they expect their prescription records to be private. But it is impossible to keep a prescription private in this country.
In 1999, I testified before the National Committee on Vital and Health Statistics about the lack of prescription privacy and the secondary uses of this very sensitive data. Patients who paid cash to ensure that records of their treatment did not reach their health plans were still discriminated against by their employers. Their employers learned that they were being treated for depression because they had access to their prescription records for antidepressants.
In 2002, I used my knowledge that the nations sensitive prescriptions are data-mined daily and sold for secondary uses as the basis for my affidavits in the federal lawsuit Citizens for Health vs. Leavitt. The plaintiffs asked the federal court in the Eastern District of Pennsylvania to restore the right of consent that HHS eliminated in the 2002 amendments to the Health Insurance Portability and Accountability Act of 1996. In my affidavits, I showed that I asked several pharmacies to stop disclosing my and my familys prescription records without consent, and my requests were all denied. The judge agreed that I had lost my right to control access to my prescription records. In effect, because of the Amended Privacy Rule, I could only beg the pharmacies to let me exercise my right to restrict disclosures of my prescription records, but the pharmacies did not have to grant my request.
The legal question at the heart of the federal lawsuit was: Do we have the right to medical privacy if we have to beg someone else to exercise it? The court awarded plaintiffs standing based on the facts in my affidavits. We lost at the trial and appellate court levels, and the U.S. Supreme Court denied our appeal.
If the highest court in the land will not defend citizens longstanding legal and ethical rights to medical privacy, then Congress must more clearly define our rights and protections in statute. HHS and its unelected panels of industry appointees and federal officials on NCVHS, the American Health Information Community and the Office of the National Coordinator for Health Information Technology have no authority to set the nations privacy standards. Americans still have strong existing national standards protecting our rights to medical privacy, but we have no opportunity to assert those rights in e-prescribing systems.
It is time to use technology wisely to improve health. It is also in the best interests of the nation to use technology to preserve and strengthen our rights to privacy. Technology can be used to lower costs, create efficiencies, while saving lives and protecting patient privacy. Technology can do it all.
Privacy is not an obstacle to benefiting from health IT. It is the only means to ensure that the public will feel safe enough to participate in an electronic health system. It is time to stop using technology to data-mine electronic medical records without consent.
The major technology companies that joined NEPSI know better than anyone that the smart use of technology can enhance patient care, save money, and improve health and safety, while saving our privacy.
We do not have to choose between privacy and health. Smart technology can provide both.
Patient Privacy Rights Foundation