Instant Access : Alarming or Empowering ?
As the 21st Century Cures Act ’ s information blocking requirements go into effect , clinicians face the realities of increased patient access .
● YEARS AGO , to share medical information with patient families , physicians at Texas Children ’ s Hospital simply printed it out and handed it to them .
“ I would tell kids and their parents to keep a binder of all their paper records so that , when the child came of age [ and transitioned to an adult specialist ], they [ would ] have all the relevant staging work ups , diagnostic work ups , and a full set of medical records to take where they needed in the future ,” Alexandra Stevens , MD , PhD , assistant professor in the hospital ’ s department of pediatrics , recalled .
That has all changed , she said . Now , all this information , including test results , is available on the patient portal , which most patients have instant access to from their phones before the clinician has even entered the room .
Improved access to medical records is a provision of the 21st Century Cures Act , the sweeping health care legislation passed by U . S . Congress in 2016 . Known as the Cures Act , the law was designed to help accelerate medical product development and bring new innovations and advances to patients more quickly and efficiently . 1 Title IV of the legislation focuses on advancing a concept called “ interoperability ”: supporting access , exchange , and use of electronic health information , and preventing data blocking .
In October 2020 , the U . S . Department of Health and Human Services ’ ( HHS ’) Office of the National Coordinator for Health Information Technology ( ONC ) announced that , in light of the COVID-19 pandemic , hospitals and providers would have about six additional months to come into compliance with the information blocking components of the Cures Act : Interoperability , Information Blocking and the ONC Health IT Certification Program Final Rule . 2 The projected start date for information blocking provisions is April 5 , 2021 .
According to ONC , the rule is designed “ to give patients and their healthcare providers secure access to health information [ and ] increase innovation and competition by fostering an ecosystem of new applications to provide patients with more choices in their healthcare .” 3 The rule also includes a provision requiring that patients can electronically access all their electronic health information at no cost through the use of application programming interfaces .
Additional requirements of ONC ’ s rule – slated for 2023 – will allow patients to download this information to their choice of a compliant third-party app . 4
In theory , granting patients unrestricted access to their medical information is easy to support . In practice , however , physicians are having to come to terms with the repercussions of patients knowing things before they do .
What Can – and Can ’ t – Be Shared ?
With an original start date of November 2020 , some health care providers and hospitals , including Texas Children ’ s , had brought themselves into compliance with the information blocking rule prior to the announcement of the extension .
The rule outlines eight types of clinical notes that must be shared : consultation notes , discharge summary notes , history and physical notes , imaging narratives , laboratory report narratives , pathology report narratives , procedure notes , and progress notes . 5
ONC has also defined eight specific exceptions to information blocking . 6
18 ASH Clinical News March 2021