Patients found to overwhelmingly prefer immediate access to test results, even when the news may not be good

In April 2021, new federal guidelines went into impact mandating that well being care suppliers make practically all take a look at outcomes and scientific notes instantly obtainable to sufferers. Proof means that sufferers might achieve necessary scientific advantages by reviewing their medical information, and entry via digital affected person portals has been advocated as a method for empowering sufferers to handle their well being care and for strengthening patient-clinician relationships. Nonetheless, issues stay concerning the results of releasing take a look at outcomes to sufferers earlier than clinicians supply counsel or interpretation.

In a current multisite survey of greater than 8,000 sufferers who accessed their take a look at outcomes by way of a web-based affected person portal account, researchers at Beth Israel Deaconess Medical Heart (BIDMC) and colleagues discovered that customers overwhelmingly supported receiving the outcomes instantly, even when their supplier had not but reviewed them. The findings, printed in JAMA Community Open, confirmed solely a small subset of sufferers reported experiencing further fear after receiving irregular take a look at outcomes. As well as, pre-counseling by the well being care staff earlier than checks have been ordered was linked to diminished fear amongst sufferers with irregular outcomes.

“On-line affected person portals have emerged as necessary instruments for growing affected person engagement,” stated co-senior creator Catherine M. DesRoches, DrPH, government director of OpenNotes, the worldwide motion primarily based at BIDMC targeted on growing info transparency in well being care, and affiliate professor of drugs at Harvard Medical College.

“They permit sufferers to entry info, take part in medical decision-making and to speak with clinicians. Prior research carried out by OpenNotes investigators established quick launch of scientific notes as a really helpful greatest follow. Nonetheless, releasing take a look at outcomes to sufferers instantly, typically earlier than a clinician can present counseling and context, was but to be studied broadly and stays controversial.”

To evaluate affected person and caregiver attitudes and preferences associated to receiving take a look at outcomes via the affected person portal, DesRoches and colleagues delivered surveys to greater than 43,000 sufferers and care companions who accessed their take a look at outcomes by way of a web-based affected person portal account between April 2021 and April 2022. The survey was fielded in 4 geographically various medical facilities; College of California, Davis Well being, College of Colorado Anschutz Medical Heart, College of Texas Southwestern Medical Heart and Vanderbilt College Medical Heart. Tailored from a beforehand validated instrument, the 29-question survey lined subjects together with take a look at consequence info, consequence assessment conduct, training and follow-up by suppliers, the impact of reviewing outcomes on well being and well-being, and person preferences for receiving future take a look at outcomes.

Of the 8,139 survey respondents, 80% reported reviewing not less than one take a look at consequence prior to now month. Most respondents (57%) reported regular findings. When requested about their preferences for contacts about future take a look at outcomes, 90% of respondents with regular outcomes indicated they would favor receiving their consequence by way of the affected person portal. Almost all respondents, 96%, indicated a choice for receiving outcomes via the affected person portal as quickly as they’re obtainable, even when their supplier had not but reviewed them.

With respect to sufferers’ fear, fewer than 8% reported being extra anxious after viewing take a look at outcomes. Amongst respondents who reviewed a consequence earlier than being contacted by a supplier, nearly half reported feeling much less anxious after reviewing their outcomes via the portal. Amongst these reporting not regular outcomes, most (84%) reported much less or no change of their stage of fear. Nonetheless, respondents who considered not regular outcomes have been extra prone to report being extra anxious, or way more anxious, than these reporting regular outcomes (17% versus 5%).

The survey outcomes recommend that sufferers receiving not regular outcomes are certainly at elevated threat for fear. Nonetheless, greater than 95% of contributors who acquired irregular take a look at outcomes reported preferring to proceed to obtain instantly launched outcomes via the portal.

“Respondents overwhelmingly most well-liked to obtain take a look at outcomes via the affected person portal, even when it meant viewing outcomes previous to discussing them with a well being care skilled,” stated co-author Liz Salmi, communications and affected person initiatives director of OpenNotes at BIDMC.

“As well being care methods proceed to navigate this new period of well being info transparency, balancing sufferers’ expectation of quick entry to their info with the necessity to handle elevated fear is necessary. Extra analysis is important to raised perceive the nuance of fear from receiving irregular take a look at outcomes, particularly because it pertains to revealing details about a newly recognized situation equivalent to Huntington’s illness or most cancers.”