While some patients prefer to get test results immediately through a patient portal, others prefer to hear the news from a trusted physician who can put the results in context and explain next steps that can be taken.
Whatever patients’ preferences may be, they should be given the choice to get the information in the manner they want without having their physician’s actions dictated by rigid federal regulations.
This conundrum has come to the forefront because of prohibitions on information blocking that are being promulgated in federal rules as part of the 21stCentury Cures Act’s implementation. The law, however, does allow states to establish exceptions to the requirements for immediate release of information, and Kentucky and California have already passed laws permitting a pause before patients are surprised by receiving bad news in a text message.
Both the Kentucky and California state medical associations supported the bills in their states and patients helped push them through the legislative process to adoption. The AMA has drafted model legislation—the Sensitive Life-Changing Test Results Protection Act (PDF)—that can be used by other state medical associations to launch similar action in their own legislatures.
“Patients have a fundamental right to access their own health information, however, inflexible rules do not allow for those rare, brief pauses to allow physicians to contact patients with bad news and respect patient preferences,” the model bill states. “Rules around outreach to patients should recognize the complexities and consequences of certain test results, medical reports, and clinical notes that benefit from physician review.”
The AMA model legislation also notes that “patients who wish to receive their test results immediately and express a desire to do so should still be able to request and receive their information without delay.”
The bill calls for allowing the ordering physician to “have an opportunity to review the results prior to their release as part of the patient’s electronic health record or patient portal in order to share the news more personally with the patient, provide appropriate medical guidance and support, answer questions about prognosis as well as treatment options, and gather appropriate resources for the patient.”
The bill cites an AMA-conducted survey (PDF) that found these are things that patients want. Of the 1,000 patients who responded to the survey, 65% said they wanted to speak to their physicians first before getting life-changing test results.
Bipartisan majorities pass bills
Even in today’s politically divisive climate, the bills in Kentucky and California passed with overwhelming bipartisan majorities in 2022.
“Giving patients access to their own health information is very important because it allows them to be partners in their care,” then-California Medical Association President Robert E. Wailes, MD, said in a news release. The law would “give patients the support they need when learning of sensitive and potentially life-changing information about their health and well-being.”
Kentucky’s Compassionate Patient Care Act gives physicians 72 hours to review test results that could indicate a fatal diagnosis and to develop a plan for communicating this information to their patient.
While urging other states to take similar action, two Kentucky physicians echoed these sentiments in an editorial published in JCO Oncology Practice, a journal of the American Society of Clinical Oncology.
“Terminal illnesses shouldn't be discovered alone—now, in Kentucky, they won't be,” they wrote.
Many patient horror stories
The AMA is making sure that the Biden administration is aware of physicians’ concerns.
“The AMA and dozens of state medical associations and national medical specialty societies continue to hear from patients and physicians about the harm being caused when results that show debilitating, life-limiting or terminal illnesses are sent to patients without context,” AMA Executive Vice President and CEO James L. Madara, MD, wrote last year in a letter (PDF) to Micky Tripathi, PhD, MPP, the national coordinator for health IT.
“We have collected hundreds of stories from patients and physicians about serious emotional distress and ethical concerns caused by the implementation of these regulations,” Dr. Madara added.
AMA information-blocking resources (PDF) are included in its Patient Access Playbook. Other resources include a two-part explanation of the basics of information blocking (PDF) that helps physicians understand what information blocking is, when information can be withheld, and how physicians can comply with information-blocking regulations (PDF). The AMA has created a separate resource explaining electronic health information (PDF).
