Patients must have the authority to restrict clinicians' access to
information in their electronic medical records if the medical community
expects patients to accept and provide full information to such digital data
APA recently endorsed the inclusion of data blocking by
patients—despite the risk that needed information might be kept from
physicians—in the coming National Health Information Network (NHIN) in
testimony before a Department of Health and Human Services (HHS) panel
considering guidelines for digital health records.
The federally funded NHIN will aim to make patient health information
electronically available at any location that a patient goes for health care.
The network is expected to help physicians provide better care and avoid
ordering duplicate services and lab tests.
Psychiatrist Robert Kolodner, M.D., national coordinator for health
information technology in the Department of Health and Human Services, is
overseeing the approval of several contracts that will help develop the NHIN
(see "Psychiatrist Appointed To Top HIT Post").
"Although some individuals have expressed concerns that patient
restrictions on information access may hamper care by impeding knowledge of
key medical information, the opposite may actually be true," said
Zebulon Taintor, M.D., vice chair of the Department of Psychiatry at New York
University. "Patients may feel more comfortable sharing personally
sensitive information with physicians if such access controls are in
Taintor testified on behalf of APA at a hearing last month held by HHS's
National Committee on Vital and Health Statistics Subcommittee on Privacy and
Confidentiality. He is a member of the APA Committee on Electronic Health
In addition to concerns raised by APA and others, the use of health
information technology (HIT) in general and electronic health records (EHRs)
in particular face many obstacles to broader adoption, including the cost and
complexity for physicians. The panel's hearing was focused, in part, on plans
to establish the NHIN to digitize patient records and modernize the health
APA supports patient control of specific elements of their EHRs, including
control of access to the EHR or personal health record (PHR), Taintor
The need for such patient controls was made clear by a growing body of
research that found a significant number of patients were already withholding
information due to concerns about who can access it. A Harris Interactive poll
in March found that 17 percent of patients withheld information from their
health care professionals because of worries the information might be
"These rates are likely to be even greater if information exchange is
electronically enabled," Taintor said.
On a practical level, research indicates that medical information remains
vulnerable. A 2006 Government Accountability Office report concluded that
medical and financial privacy for Medicare, Medicaid, and other federal health
program enrollees is vulnerable to fraud and abuse.
Patient concerns about the release of medical information and the danger
inherent in the release of this information—accidentally or
otherwise—are particularly important to psychiatry, due to the societal
stigma and heightened confidentiality concerns that come with mental health
and substance abuse treatment.
Such a patient-controlled system also could include special provisions
giving physicians access to all areas of a patient's record "under
emergency conditions," that is, when rapid access to information is
essential and the patient is unable to give consent. This type of feature
would allow increased access to patient information, even within a design that
gives patients control of access to EHRs.
Other testifying physician groups also called for emergency access
provisions to patient-blocked EHR data if it is necessary to protect"
the patient and society from the harm that could be reasonably expected
to occur if critical data were not disclosed."
Such protections would allow patients to benefit from the advantages of an
EHR, including the ability of all treating physicians to have access to their
complete medical record.
"Currently, health records are often limited to a single practice in
a single specialty, providing only a slice of a patient's medical history..
.potentially missing information from other treating physicians that may be
relevant to the diagnostic or treatment process," said Robert J.
Flagnant, M.D., who testified for the American College of Obstetricians and
Although EHRs introduce new risks to patient privacy, Taintor said, a
properly implemented system could provide more protection than possible with
paper records, such as an audit trail of who has viewed the record.
"Indeed, the ease with which data in electronic form can be
disseminated makes such control essential," he said.
Additionally, EHR access logs should include detailed information, such as
the role of the person who accessed the information and the reason for the
access, to be meaningful to the patient.
Taintor called for so-called granular sharing that would limit access to an
individual's record for people other than clinicians, including insurance
companies, family members, and administrative support staff. This type of
access would better protect patient privacy and maintain physician-patient
trust than "all-or-none" record-access proposals.
Patient access controls were not universally supported at the hearing.
Michael Zaroukian, M.D., Ph.D., a representative of the American College of
Physicians, testified in support of patient privacy controls for "mental
health therapy notes" but not for information such as prescriptions and
"The absence of such information—or even delayed
access—could result in otherwise avoidable patient harm," he
Brian Keaton, M.D., president of the American College of Emergency
Physicians, said his organization supported the right of patients to withhold
information in EHRs but requested that guidelines require the record to state
that the information it contains is incomplete.
The success of a patient privacy protection system for EHRs will ultimately
depend on the use of "tough enforcement mechanisms" to ensure that
breaches are few and privacy violators are punished.
"Apologizing and making improvements once data are lost is not a
sufficient response," Taintor said. "Rather, existing privacy
rules must be enforced, and all electronic storage or transfer of information
must rigorously protect the privacy of patients' personal health
Strong privacy protections would allow the many advantages of a national
HIT system to raise the overall quality of care provided to patients, increase
patient safety, keep health professionals informed about the latest standards
of care, and improve efficiency in communicating important health care
information, according to Taintor.
Information on federal health information technology efforts is posted at <www.hhs.gov/healthit/onc/mission/>.