Open notes, transparency, and the Cures Act
Myron Yaster MD, James Xie MD, Jorge Galvez MD and Ellen Wang MD
“What are patients entitled to know, see, and understand about their care”? [1] As discussed this week in a repost of the March 13th PAAD, the CURES act is a game changer. In essence, patients in the United States now have the RIGHT to access their health records without delay (“real time”) and with very few exceptions. The perioperative environment is not one of those exceptions, which means that the anesthetic record, including procedure notes, vital signs, lab results, etc. may become visible to patients and caregivers in real time via the patient’s health record portal. The caregivers of pediatric patients who are considered minors have access to patient health record portals that pose a unique challenge in the pediatric perioperative environment, since the caregivers can access these records while the patient is in the operating room. The caveat being that most electronic health record vendors are not quite there yet in terms of how they release this information, but eventually they will be in order for hospitals and health systems to be in compliance. This health care transparency is not limited to records. Family presence in the pediatric operating room may become routine as well, not just at induction but throughout the case. WOW!!
We will discuss parental/family presence in the operating room in an upcoming PAAD and we will use the expertise of our critical care team to describe how parental presence is now common in the PICU even during resuscitation and ECMO cannulation. Today we will focus on the electronic medical record and anesthetic record. Although I (Myron) personally think that all of this is absolutely and completely nuts, the CURES act is now the law of the land. So all of this is currently or will shortly be coming to your operating rooms and as the authors point out this is an opportunity as well as a leap of faith. It will fundamentally change how you practice. What this means and how it will be implemented is the focus of today’s PAAD. I’ve asked 2 of the authors of the original article James Xie and Ellen Wang to assist Jorge Gálvez and myself in writing today’s PAAD. I’m sure many of you will have a lot to say about this and I will post your thoughts in a future reader response. Myron Yaster MD
Original article
Priya Ramaswamy, James Xie, Angela M Marsiglio, Alyssa M Burgart, Cliff A Schmiesing, Neal H Cohen, David L Robinowitz, Ellen Wang. Keeping an Open Mind About Open Notes: Sharing Anesthesia Records With Patients. Anesth Analg. 2022 Oct 1;135(4):697-703. doi: PMID: 36108183
Editorial
Littlewood KE, Park CS. Engaging Transparency and Being on the Right Side of History. Anesth Analg. 2022 Oct 1;135(4):694-696. PMID: 36108182
“The US 21st Century Cures Act’s (Cures Act) Information Blocking provision mandates patients have free and timely access to their electronic health information ‘without special effort’ effective as of October 2022. The OpenNote movement started in 2010 now includes all perioperative procedure notes by making no exception for anesthesia documentation. Accordingly, perioperative and anesthesia notes are now mandated to be electronically accessible to patients.”[2]
In the non-operative setting, “clinicians have found open notes beneficial overall, patients and families have found them useful in understanding health conditions, and improved trust in doctor–patient relationships.”[2, 3] Our perioperative experience with patients is very different than that of other doctors. We meet our patients and their caregivers only minutes before we take them to the operating room and must develop a bond of trust and confidence in a matter of minutes or even seconds. The authors of today’s PAAD believe that open notes “have the potential to improve trust and transparency, thus enhancing their perioperative experience with anesthesia providers.”[2] They view this as an opportunity rather than a burden. If we don’t view this as an opportunity, we allow others to define what the meaning of these records are, instead of us – the anesthesiologists who are creating the records.
What are some of the challenges?
When should data be released? “Should results be released as they are happening in a case (eg, an abnormal hemoglobin, blood gas, or glucose levels in a diabetic), when no one is present to counsel the patient’s caregivers who have access to records”?[2] Clinical vignettes where a concerned caregiver in the waiting room is anxious about an abnormal lab result and is attempting to contact the team caring for their child are sprouting around the country. Many hospitals have put in place mechanisms to delay data release until the close of the anesthesia record. If you don’t know what is happening at your institution, this is an opportunity to ask! Provider burden: “Transparency will require new skills and, quite likely, time investment for every patient (eg, additional documentation or more time spent counseling patients before and after surgery)?”[1, 2] The pre-operative evaluation offers an opportunity to alert patients and caregivers that the information may be available to them and that the anesthesiology team will always be present in the operating room, managing the acute needs throughout the surgery. If the team has questions, they can be reviewed after surgery.
How will this information be made available to non-English speaking patients? What happens when a patient or family asks about their records after discharge from the recovery room? Who will be responsible for answering such questions?
Legal liability: Will this increase the number of lawsuits? How will we document communication of care, risks, creation of valid and reliable data, and disclosure of trainee care will need to be thought about. In the Open Notes experience for other specialties, lawsuits did not increase, but rather patient engagement increased. Keep in mind the anesthesia record was always available to people before – it’s just that the barrier to obtaining access to the record is much lower now.
Confidentiality, Conflict, and Respect: “How will insure patient privacy with adolescents or sensitive encounters? How should disagreements with a patient be documented?”[2] In our adolescent patients, depending on what state you are in, adolescent confidentiality laws govern what must be kept confidential between the adolescent patient and their healthcare providers (e.g. reproductive health, substance use). Are your perioperative notes setup in a way that protects adolescent confidentiality?
Patient misinterpretation: “The daily work of the anesthesiologist could come to include discussion and explanations of witnessed events and particular data during our debriefing with patients and families after major surgeries and unexpected events.”[1] How will anesthetic vital sign artifacts be dealt with? Many people feared that when electronic anesthesia information management systems (AIMS) were deployed that we would all get sued for aberrant vital signs getting recorded into the chart (this did not happen). However now that procedure notes, preoperative evaluations, and medications will all be put out there – how will patients receive and react to this?
Performance impairment: distracted, nervous, and/or judged with family members present, with the implication of possible team performance degradation. We will discuss this one in much greater detail in an upcoming PAAD.
We encourage you to read this article and the accompanying editorial and to have faculty and partner meetings to discuss these myriad issues. The medical record has always belonged to the patient – now that it is required to be more accessible to them there may be some growing pains in the implementation of completely transparent medical records – but it’s now our opportunity as a specialty to shed light on what we do to protect patients on a daily basis.
Time to get our heads out of the sand on this one…
References
1. Littlewood, K.E. and C.S. Park, Engaging Transparency and Being on the Right Side of History. Anesth Analg, 2022. 135(4): p. 694-696.
2. Ramaswamy, P., et al., Keeping an Open Mind About Open Notes: Sharing Anesthesia Records With Patients. Anesth Analg, 2022. 135(4): p. 697-703.
3. Bell, S.K., et al., When doctors share visit notes with patients: a study of patient and doctor perceptions of documentation errors, safety opportunities and the patient-doctor relationship. BMJ Qual Saf, 2017. 26(4): p. 262-270.