Ethics of giving patients access to EMRs
Executive Summary
Patients are increasingly accessing their electronic health care records, and in some cases correcting inaccuracies in the chart.
• Increased transparency is motivating hospitals to give patients access to their medical records.
• Advocates of increased patient access to medical records argue that this will result in improved care.
• One concern is that evidence of inaccuracies could decrease the patient’s trust in their medical team.
Medical paternalism "no longer acceptable"
A growing number of organizations are giving patients access to their electronic medical records (EMRs), and, in some cases, allowing patients to communicate with providers to correct inaccuracies.
"Advocates of increased patient access to their medical records argue that this will result in improved care and better communication," says Blair Henry, BSc, MTS, an ethicist at Sunnybrook Health Sciences Centre in Toronto, Ontario, Canada.
Traditionally, few patients viewed their medical records. "This is not surprising, given that patients are not routinely advised of their right to look over their medical records, and that a request to view their chart necessitates an appointment with a health care professional to help interpret what they are seeing," says Henry. Other obstacles are the cost and long wait times typically involved in obtaining the records.
Growing emphasis on promoting transparency, however, is motivating an increasing number of hospitals to give patients access to their EMR, says Paul B. Hofmann, DrPH, FACHE, president of Hofmann Healthcare Group, a Moraga, CA-based consulting firm specializing in health care ethics.
"Legally and ethically, the issue of what to do about personal health information is well established," says Henry. "The patient owns the data, and the custodian of the chart — the physician or hospital — owns the system it’s held in."
One concern is that evidence of inaccuracies could decrease the patient’s trust in their medical team. "Anyone dealing with medical charts knows that errors in transcription of information into charts is an all-too-common phenomenon," says Henry.
From the perspective of those entering patient information in the medical record, Hofmann says there are both practical and ethical implications. For example, he notes, nurses, physicians, and others must think more carefully about documenting observations regarding a patient’s attitude and behavior affecting his or her treatment and prognosis.
"However, not charting relevant information can obviously compromise continuity of care, and does not serve the patient’s best interests," says Hofmann. "Striking the right balance will remain a significant challenge."
Patient access to EMRs, coupled with the adoption of new technologies such as remote health data monitoring and patient-reported outcomes measurement systems, says Blair, "just might be the leading edge of a digital revolution that can change fundamentally what it means to be a doctor."
Is it in patients’ best interest?
In a 2012 study in which 105 doctors shared their notes with more than 19,000 patients in Boston, rural Pennsylvania, and Seattle, virtually all participants supported the idea of seeing their medical notes. None of the participating physicians chose to stop sharing visit notes with their patients once the study ended.1
"My feeling is whatever the physician writes in his or her notes should be shared with the patient," says Neil J. Farber, MD, FACP, professor of clinical medicine at the University of California, San Diego in La Jolla, CA. "As a shared decision-making model becomes more widespread, why shouldn’t the patient share in the knowledge that the physician has?"
In the past, one of the main reasons for not giving patients access to their medical records was that it was believed that it could harm them, says Rosalind Ekman Ladd, PhD, a visiting scholar in philosophy at Brown University in Providence, RI.
Providers believed patients wouldn’t understand the information, could misinterpret it, and could become confused, anxious, or even suicidal. "Medical knowledge, it was said, is special knowledge which can be understood only with the special training that doctors have," says Ladd. "Physicians practiced a kind of paternalism, meant to protect the patient."
These long-held assumptions are now being challenged. "In many ways, patients are better educated now about medical matters," she says. Medical advances also make learning about a diagnosis less devastating in some circumstances.
"Ethical standards have changed as well," says Ladd. "Thus, medical paternalism, which includes withholding information from patients, however well-motivated, is no longer acceptable."
If physicians fulfill their responsibilities by giving patients truthful information directly, says Ladd, then patients should not find anxiety-producing surprises when they review their EMR.
"In the ideal, this should lead to a more open, honest, trusting relationship, and no suspicion that the doctor is hiding something," says Ladd.
- Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Ann Intern Med 2012;157(7):461-470.
- Neil J. Farber, MD, FACP, Professor of Clinical Medicine, University of California, San Diego, La Jolla, CA. Phone: (858) 657-8000. E-mail: [email protected].
- Blair Henry, BSc, MTS, Ethicist, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada. Phone: (416) 480-6100 ext. 7178. E-mail: [email protected].
- Paul B. Hofmann, DrPH, FACHE, President, Hofmann Healthcare Group, Moraga, CA. Phone: (925) 247-9700. E-mail: [email protected].
- Rosalind Ekman Ladd, PhD, Visiting Scholar in Philosophy, Brown University, Providence, RI. E-mail: [email protected].
