S4263

An Act concerning electronic health information and supplementing Title 45 of the Revised Statutes.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. This act shall be known and may be cited as the “Sensitive Life-Changing Test Results Protection Act.”

2. The Legislature finds and declares that:

a. The federal 21st Century Cures Act, Pub. L. No. 114-255, made sharing electronic health information the expected norm in health care and established information blocking as practices by health care providers, including physicians, that are likely to prevent, materially discourage, or otherwise inhibit the access, exchange, or use of electronic health information. The act also permits states to establish exceptions to the act’s provisions.

b. Rules implementing the federal 21st Century Cures Act effectively require the immediate electronic release of all test results to patients before patients have had an opportunity to talk with their health care provider, which can lead to patient confusion and potential emotional and mental harm to the patient.

c. Patients have a fundamental right to access their own health information. However, inflexible rules do not allow for those rare, brief pauses to allow health care providers to contact patients with bad news or respect patient preferences. Rules related to electronic health communication with patients should recognize the complexities and consequences of certain test results, medical reports, and clinical notes that benefit from health care provider review.

d. In rare instances when a radiologic test, biopsy, or other medical testing or procedures reveal unexpected and potentially life-changing results, the ordering health care provider must have an opportunity in a reasonable amount of time to review the results prior to their release as part of the patient’s electronic health record or patient portal. This will allow the ordering health care provider the ability to share the medical results more personally, with a medical context, and provide appropriate medical guidance and support, answer questions about prognosis as well as treatment options, and provide appropriate resources for the patient, including referrals for psychological therapeutic support as appropriate.

e. According to an American Medical Association-led survey of 1,000 patients in 2022, 65 percent of patients indicated that they would prefer to speak with their physician first before getting life-changing test results. Participants were first asked if they would prefer their health care provider to contact them about results of lab tests or diagnostic studies before the results became available in a patient portal and nearly 43 percent said “no.” For those who said “no,” participants were then asked if it made a difference if the results showed a debilitating, life-limiting, or terminal illness. More than 50 percent of people said “yes” that they would want a physician to review and contact them with life-changing test results before this information was posted to a patient portal.

f. 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.

g. Therefore, the Legislature should protect patients and not needlessly put them at risk of emotional or mental harm by creating an exception to the forced immediate disclosure requirement under the federal 21st Century Cures Act.

3. As used in this act:

“Electronic health record” means an electronic record of health-related information on an individual that is created, gathered, managed, protected, and consulted by authorized health care clinicians and staff.

“Patient portal” means a secure online system that provides patients access to electronic personal health information and is directly linked with an electronic health record.

“Sensitive, life-changing test results” means the results of a: clinical laboratory test; imaging scan, such as an x-ray, magnetic resonance imaging, ultrasound, or other similar technologies; or other medical test or procedure that tests for serious mental or physical illness that the treating health care provider in the provider’s clinical judgement determines may indicate permanent impairment, loss of function, or death.

4. a. Sensitive, life-changing test results may not be disclosed to a patient or the patient’s representative, as part of the patient’s electronic health record or patient portal, earlier than three business days after the date that the sensitive test results were finalized, unless the patient’s treating health care provider directs the release of the sensitive test results before the end of the three-business day period or as permitted by subsection b. of this section.

b. Sensitive, life-changing test results may be disclosed to the patient immediately if the patient requests to receive the patient’s results without delay.

c. The person or entity responsible for the administration of the patient’s electronic health record and patient portal shall be required to implement the provisions of this section.

d. Nothing in this section shall be construed to be an act of information blocking as defined under 42 U.S.C. s.300jj-52.

5. This act shall take effect immediately.

STATEMENT

This bill establishes the “Sensitive Life-Changing Test Results Protection Act.” This bill provides that sensitive, life-changing test results may not be disclosed to a patient or the patient’s representative, as part of the patient’s electronic health record or patient portal, earlier than three business days after the date that the sensitive test results were finalized, unless the patient’s treating health care provider directs the release of the sensitive test results before the end of the three-business day period or the patient requests to receive the patient’s results without delay. The purpose of the bill is to mitigate the risk of emotional or mental harm that might arise from patients receiving sensitive, life-changing test results without health care provider review by: creating an exception to the forced immediate disclosure requirement under the federal 21st Century Cures Act; and establishing a three-business day period in which the health care provider may contact the patient to review the results.

The bill defines “sensitive, life-changing test results” to mean the results of a: clinical laboratory test; imaging scan, such as an x-ray, magnetic resonance imaging, ultrasound, or other similar technologies; or other medical test or procedure that tests for serious mental or physical illness that the treating health care provider in the provider’s clinical judgement determines may indicate permanent impairment, loss of function, or death.