Around mid to late September 2022, I started hearing an uptick in questions from patients and their families about notices they were receiving from their health care delivery organizations and physicians’ offices about the “ability to access more or all of their health information without delay”. The Information Blocking Rules October 6, 2022 milestone was around the corner and hospitals, cancer centers, and physicians were attempting to communicate changes to prepare their patients for the anticipated changes.
For some more context, while the initial applicability date of the Information Blocking Rules was April 5, 2021, the Rules only applied to a limited scope of electronic health information (EHI) up through October 5, 2022. On October 6, 2022, this limited scope transitioned to the full scope of EHI as per 45 CFR 171.103.
Many patients were reacting with concern about the sentiments that were being conveyed:
- “This change may be unsettling for certain patients.”
- “You may not be able to understand all the information available to you.”
- “This expanded access to your health information could cause anxiety, make you nervous, or may make the weekend stressful.”
I assured patients that they always had the choice of viewing their records in their portal or waiting to view them until their doctor could discuss them with them. However, patients and their families wanted to know more, had many questions about these new rules and regulations, and had no one to turn to at their doctor’s office, cancer center, or hospital for this dialogue.
This episode of Patient Need-to-Knows: The Information Blocking Rules is determined to fill in the knowledge gaps and support patients and families in their quest to better understand what they may expect concerning their medical records and their health information.
It is an honor to be joined in this discussion by an esteemed colleague and fierce Information Blocking Rules subject matter expert, Elise Sweeney Anthony, J.D. Elise is the executive director of policy at the Office of the National Coordinator for Health IT (ONC) where she leads ONC’s engagement on a range of high-priority federal policy efforts, including regulatory development, information blocking, and TEFCA.
In the opening segment, it is undeniably clear that Elise has an unmatched passion for all things patient access as she works at the intersection of health policy, patient access, and health IT. Elise has a powerful personal story of her experiences as a patient diagnosed with breast cancer and how access to her medical records made a difference in her care and patient experience. We tackle the crux of the Information Blocking Rules and the new landscape of information sharing. Listen in here as we discuss key topics, including:
What the Information Blocking Rules are and what do they mean for patients? Check out the Report to Congress on Health Information Blocking from April 2015, an excellent reference Elise shared that provides extensive background and history around information blocking.
What patients need to know about the latest abbreviation in health care: what is EHI? All listeners should bookmark HealthIT.gov for patient access, information sharing, and health IT. Check out Understanding Electronic Health Information after this webinar, paying close attention to what is NOT considered EHI at the very bottom of this reference.
What the big deal about October 6, 2022 is concerning the Information Blocking Rules. In addition to the wealth of information being shared in our discussion, bookmark the following Health IT Buzz Blog post from Steve Posnack, Deputy National Coordinator for Health IT at ONC: Information Blocking: Eight Reminders for October 6th.
Examples of differences patients can expect to see with respect to their medical records and health information. More information about United States Core Data for Interoperability (USCDI) may be found here and while you are at it, don’t forget to explore OpenNotes!
Advice on what patients and their carepartners should do if they think they are experiencing Information Blocking.
If you believe you may be experiencing information blocking, you may file your complaint using the ONC Information Blocking Complaint Portal.
If you are curious about the submissions that are reported through this Information Blocking Portal, check out Information Blocking Claims: By The Numbers, where individuals may get updated information on the number of potential information-blocking claims received, counts by types of claimant, and counts by types of potential actor.
We wrap our conversation with what benefits Elise hopes patients and their carepartners will see and experience in the hopefully near future as a result of the full implementation of the Information Blocking Rules (spoiler alert: the future of information sharing is bright!).
Listen to the complete discussion here: https://www.youtube.com/watch?v=6pwO2_nXN_k&list=PLnBAtU_b621lQU7LYxfS3jCsdAKAIG7K3