CMIOs: Nearly 2 years in, 'open notes' increased transparency, caused some distress

Despite some initial reluctance, physicians have largely gotten used to a federal rule requiring them to share notes electronically with patients, several chief medical information officers told Becker's.

But that doesn't mean there haven't been challenges. For instance, a children's hospital leader noted that pediatric patients have unique privacy concerns.

The "open notes" rule, part of the 21st Century Cures Act, went into effect in April 2021. It mandated that physicians electronically share notes with patients about their consultations, procedure, and lab and imaging reports. The only exceptions are for psychotherapy visits or notes that could be used in a legal or administrative proceeding or harm the patient or their privacy.

Becker's asked CMIOs their feelings on the rule and how their physicians and patients have responded to it.

Charles Bae, MD. Associate Chief Medical Information Officer for Connected Health Strategy at Penn Medicine (Philadelphia). I never had a problem with "open notes" — patients always could request a copy of their notes, but in the past it could take a long time to get them, sometimes with considerable cost. It did not make sense that some doctors objected to "open notes" and felt that they had to change how they wrote their notes. Personally, I have not changed how I write my notes.

"Open notes" gives patients more control over their healthcare records, especially these days when patients may have healthcare providers in different healthcare systems that use different EHRs. There could be more education about "open notes" — many patients are still not aware that they have a legal right to access their notes and most test results.

In general, "open notes" has been well-received. There have been little to no complaints or issues raised by physicians due to patients having access to their notes and test results.

J. Clay Callison, MD. Vice President and Chief Medical Information Officer of University of Tennessee Medical Center (Knoxville). I am extremely supportive of the concept that patients have ready, electronic access to their medical records. Much of this has already been happening with great success since 2020 with the earlier phases.

The big concern I have is pathology results being immediately available within patient portals such that physicians do not have an opportunity to review and interpret the results and then communicate with their patients. We have seen significant distress and confusion among patients that could be alleviated by allowing for some brief delay in those results so physicians have sufficient time to communicate with their patients. Physicians who have 10-plus years of extra training sometimes have difficulty interpreting pathology results, so we cannot expect a patient without medical experience to understand it all.

Approximately 25 percent of our system's patients are utilizing the patient portal on a regular basis, including record review along with secure messaging with their providers. We have seen an uptick in requests to correct errors in the medical record, but these requests have typically been minor; all have been very reasonable.

Physicians at our organization have certainly come around to the "open notes" concept, with a general resistance when this was first discussed in 2015 to an overall acceptance in 2022. They still share concerns about certain items being available in the portal in real time for the patient without a physician to help interpret those results. They are supportive of notes, labs and even radiology results, but we have already had some distraught patients who have seen their pathology results and either misinterpreted those results or misunderstood the gravity of them.

Chris DeFlitch, MD. Vice President and Chief Medical Information Officer of Penn State Health (Hershey, Pa.). Penn State Health has been an "open notes" organization since the onset, and the first academic site on our EMR to do so. For us, that means patients have access to the record, via their portal, as soon as the study, test or note is completed. Patients can see it immediately. We have always believed that it is the patient's record, and we action that through the patient portal and "open notes." I'm happy to see that standardized and expanded beyond principle into practice for all.

All six of our Penn State Health medical centers are aligned with our "open notes," including our academic facility, children's hospital and community locations. This includes all of our emergency departments. We also include all of our hundreds of clinics, for all primary and specialty services, in "open notes."

Years and years ago, when championing this advancement, we had significant, passionate and varied feedback. Over the years, staff and patients have gained the benefit of "open notes" and shared data for care. It's a standard expectation. So, given that we have long adopted this as a standard for our patients across Penn State Health, the recent events for us were uneventful.

Ahmed Foda, MD. Chief Medical Information Officer of Ambulatory Practices at Temple Health (Philadelphia). I think it is a great opportunity to reach and positively influence our patients after they leave the exam room.

We unfortunately have low adoption from a patient portal perspective but are working on expanding patient adoption.

Overall, there has been no real pushback from clinicians. I always stress to the skeptics that "open notes" is a great opportunity to provide clinical clarity for the patient as well as provide the clinician an extended opportunity to counsel patients.

Jeffrey Hoffman, MD. Chief Medical Information Officer of Nationwide Children's Hospital (Columbus, Ohio). The information-blocking regulations stemming from the 21st Century Cures Act have been very challenging to comply with in pediatric settings for a variety of reasons. Unlike most adult patients, pediatric patients are typically not the sole "owners" of their health information. Except for the occasional emancipated minor, parents and guardians function as the patient's legal representative under HIPAA so have rights to all of their child's clinical notes.

This becomes an issue when they contain potentially sensitive information or details that could endanger the patient, one of the parents, or some other individual. This is most obvious in the case of child abuse, but other less obvious issues occur as well, such as in the neonatal population where maternal health information (alcohol or drug use, STDs, HIV status, etc.) is often included in clinical notes that may then become visible to the child's father who might have been otherwise unaware. The situation gets even more complex in the adolescent population.

There are various federal and state laws that protect adolescent privacy when seeking care on their own for STDs, addiction, pregnancy, etc. So, while the idea of transparently sharing clinical notes is a good one, these considerations make complying with the new law in the pediatric setting, while simultaneously protecting the patient and others from harm and respecting privacy rights among adolescents, very difficult.

Today, around 60 percent of our patients and their proxies use our patient portal, with about 400,000 logins per month. Prior to the information-blocking rules, we only released notes to the portal from our primary care practices, though notes in other settings were able to be released as desired.

Historically, less than 2 percent of these notes were being read. But since the new rules went into effect, and with us now releasing 99 percent of our notes to the portal, over 14 percent of them are now being read each month. This suggests to me that there is both greater awareness among patients and families and also perhaps a halo effect, where an initial reading of a note from a particular visit prompts more regular viewing of notes from other types of encounters. This is a ripe area for further research, especially in the pediatric population.

Surprisingly, our physicians have been generally accepting of the new rules, especially when reminded that patients and families always had access to their notes through our medical records department. Their biggest concern, of course, is with notes that contain sensitive information and limitations in our current EHR in being able to properly segregate such information from unintentional release. Often, it requires creating a separate sensitive note to be withheld so that their main note can be released. Because we also release clinical notes regardless of author, this is also an issue for nurses, therapists, social workers, and others who routinely document sensitive information in their notes as well. Thankfully, with a major and ongoing educational effort, we have so far been able to effectively manage these challenges at our organization.

Benjamin Hohmuth, MD. Chief Medical Informatics Officer of Geisinger (Danville, Pa.). I'm very supportive of the spirit of 21st Century Cures and feel strongly that patients should have easy electronic access to their health records. This has been a priority and a practice at Geisinger long before the recent federal requirements were written.

We've been sharing results via our patient portal for 20 years and have been sharing notes for over 10 years. Most of our patients have patient portal accounts and access to their notes and results is an expectation.

Our experience over the years has always been clinician angst prior to sharing a new type of information followed by very few concerns after we start sharing. There are occasional challenges sharing complex information, such as advanced imaging or pathology results with patients, but chart transparency has been a cultural norm at Geisinger for many years and is well-received by our physicians and advanced practitioners.

Beth Kushner, DO. Chief Medical Information Officer of St. Joseph Health System (Paterson, N.J.). I think having the open note rule is an extremely helpful tool that will improve transparency and communication between physicians and patients. This will help patients continue to take part in joint decision-making with their physicians in order to help participate in their care.

Although some physicians have expressed concern about patients understanding medical lingo, in general I have heard positive feedback regarding consistency amongst healthcare systems and publishing notes to patients.

Scott MacDonald, MD. Chief Medical Information Officer of UC Davis Health (Sacramento, Calif.). Personally, I've found benefits for both my patients and myself. My bias has always been toward transparency with my patients, and seeing my notes can reinforce my concerns and recommendations between visits. I hope it also illustrates that I've heard their concerns, which builds trust between us and should indirectly improve outcomes.

I've not had any complaints about content other than corrections of typos. I encourage patients in some situations to read my notes in order to make sure they understand (perhaps with family help) what is going on medically and important details of the treatment plan. Saves me time from having to include it in my progress note as well as the patient instructions section.

I have not significantly changed my writing style: Patients can Google my jargon, and I'll spend an extra five seconds carefully phrasing a sensitive topic. Since I've already said most everything during the visit, I don't see a reason to exclude the patient from the record of the discussion!

Releasing results without delay has caused a bit more work when unexpected abnormalities come back and patients send questioning messages before I've had a chance to review the results. Providing anticipatory guidance on how results will be addressed — setting expectations about receiving an explanation — has helped reduce this type of work.

Only 0.3 percent of notes in November were held back for one of the exception reasons in the rule. Our analytics show that about 13 percent of them are read. Rates vary in the range of 8 percent in the hospital, to 17 percent in some clinics. I've had some months with up to a 33 percent read rate. Feedback from patients has generally been positive. UC Davis Health hasn't systematically solicited feedback, as the literature clearly supports OpenNotes. The actual impacts on clinics and patients are difficult to quantitate, or even demonstrate qualitatively, and probably would be most relevant to a subset of patients.

After the initial concern about impacts on their patients and teams, the notes part has been a relative nonissue. Some have added disclaimers to their note templates to encourage patients to discuss concerns about notes in subsequent visits. We also provide some guidance in the patient portal to help patients interpret the purpose and jargon in provider notes.

We are working on system-level tactics to address the increased number of patient messages (up to about 75 percent since pre-pandemic), including the relatively small portion that is driven by questions about results.

Bill Manard, MD. Regional Chief Medical Informatics Officer for Intermountain Health (Salt Lake City). I feel that, for those patients who choose to engage in their healthcare in this way, OpenNotes provides a powerful tool to better understand the "why" of their providers' recommendations. The tool allows patients greater insight into the decision-making process, and it better prepares them to have an engaged discussion with their provider on their own plan of care. Providers may at times have to answer additional questions regarding their documentation, but these questions can facilitate a conversation that may improve the overall provider-patient relationship and understanding of treatment plans.

Currently, about 10 percent of our notes are viewed in any given month.

In general, after some initial discomfort, most physicians have accepted the change. Having the regulatory requirement certainly helped foster acceptance, but providers also saw that it was quite infrequent that most patients had additional questions prior to the next visit based on their documentation.

Gregg Nicandri, MD. Chief Medical Information Officer of University of Rochester (N.Y.) Medical Center. Overall, I think the principle of "open notes" is fantastic. As providers, we all know that patients only remember a small amount of what is said during clinic visits. Now they can access their notes electronically through our portal and refer to them anytime they want. Ultimately, this results in better-informed patients who can be more active and engaged in their care.

We went live with "open notes" several years ago and, initially, adoption was quite low. Over time, as more patients have started to engage electronically, the number of patients accessing and reviewing their notes has increased tremendously.

Initially, there was quite a bit of trepidation but there have been surprisingly few issues and concerns post-go-live. Messaging, educating and managing patient expectations around this have been extremely important. It is also important to realize that though "open notes" is good for many, it is not appropriate for all populations and conditions. We have spent a lot of time making sure we have safeguards in place to protect individuals where access to "open notes" could be problematic.

Brett Oliver, MD. Chief Medical Information Officer of Baptist Health (Louisville, Ky.). Patients are not seeing anything they did not already have access to — we have just lowered the bar on ease of obtaining. Now, we "push" the clinical note to the patient rather than them having to contact our organization and request a copy. We educated our clinical providers on abbreviations and language.

It really has been a nonissue for our providers, and I think it has really helped a lot of patients and their families. The majority find a better understanding of a visit when they have something to refer to. We estimate 80 percent-plus are opened.

There was some initial apprehension, but all in all, the notes issue has been a nonissue with our physicians.

Paul Snyder, MD. Chief Medical Information Officer of Concord (N.H.) Hospital Health System. It is an important and welcome advance in patient care. Patients have been asking for and deserve access to their own healthcare information.

Roughly two-thirds of our patients have opened accounts, and most are taking advantage of viewing notes.

Our health system instituted "open notes" about two years ago. In advance of the go-live, there was a lot of strident pushback from a small but vocal group of providers; since the release of "open notes," there's been hardly a peep from any providers. It was essentially a nonevent. The recent move to immediate release of all lab/radiology/pathology reports has been a little more of an issue, with several reports from providers of difficult situations arising from patients getting a bad path or X-ray report back and blindsiding the provider (or someone covering for them in their absence) with it.

Mark Weisman, MD. CIO and Chief Medical Information Officer of TidalHealth (Salisbury, Md.). I am a believer in the "open notes" rule because patients that read their notes are more engaged with their care. They pick up on dictation mistakes, laterality errors, and medication errors. I also find they ask better questions when they come in for their visits. I dictate my notes in front of the patients in the exam room, so we are building the notes together. Sending them a copy of that note when it is signed seems natural.

We have MyChart for about 50 percent of our patients and our latest MyChart numbers show that only 10 percent of our notes are being opened. Patients are much more interested in lab results than their office notes.

We switched to "open notes" a few years ago and while socializing the upcoming change I estimate 50 percent were skeptical of the idea. Nobody was fiercely against it, and when it did go live it was a "nonevent." Nobody noticed. Nobody cared.

I never hear complaints from the providers on this topic of notes, although I do hear about a related topic which is "open labs" (including pathology reports). Some patients have learned about a cancer diagnosis through MyChart. We have a message in our portal letting patients know they may see their result before their physician, and they cannot unsee it once they look. If a patient knows they get very anxious over these things, so they may wish to wait until they are with their doctor so they can ask appropriate questions in real time. Many of our doctors address this potential situation when getting consent for the procedure.

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