You may read and write lots of notes every year, but the only notes your patients review are their own. Increasingly, they add a second set of eyes…
New for health professionals
Since April, 2021, federal program rules addressing “Interoperability, Information Blocking, and ONC Health IT Certification” require healthcare providers to offer patients access to virtually all the health information in their electronic medical records. This is to be free of charge, and it includes the progress notes prepared by doctors, nurses, PAs, and a broad range of therapists. Learn more about the Rule.
Patients who read notes report that they:
- have improved understanding of their health and medical conditions
- recall their care plan more accurately
- are better prepared for visits
- feel more in control of their care
- take better care of themselves1
- take their medications as prescribed more frequently2
- have more successful conversations and stronger relationships with their doctors
And keep in mind: Reminding patients that notes are available and providing clearly marked patient portals are important for engaging patients in a practice that is new to them..
Recent research suggests that inviting patients, families and care partners to review notes may help them identify clinically important inaccuracies, address confusion about the care plan, or find lapses in follow up that, once rectified, improve safety. In a recent study, 24% of doctors who had been using open notes for a year or more reported that a patient had identified an error that the doctor characterized as “serious.”13 14 15
But changing a record, even in pursuit of clarity or correction, is not easy and is highly dependent on where you practice. Moreover, changing a note, whether or not at a patient’s request, is at the clinician’s discretion. If you feel the change improves the note, you can document the change as an addendum, or use mechanisms in place at your institution to edit/correct a note.
In the initial open notes study and in wide-spread subsequent experience nationally, patients rarely request that clinicians change the record. Overall, institutions report little or no uptick in requests for changes to the record after the implementation of open notes.
Bottom line: Whether by addendum, correspondence back and forth, or actual revision…there’s a way to pursue accuracy, and it’s often well worth doing.
Many patients, particularly those chronically ill or elderly, rely on family members or other care partners to coordinate appointments, tests, medications, and care plans. Data suggest that care partners may benefit from note sharing as much as patients themselves. 6 7
Unfortunately, care partners today are increasingly stressed, often to the point of being at risk for illness. In this circumstance, transparent communication among all concerned becomes particularly important..
Bottom line: Transparent communication may be a powerful way to diminish care partner stress.
In several studies of open notes, virtually all patients wanted them readily available, whether or not they chose to read them. Reading rates vary widely. If a practice embraces transparent communication, reading rates increase. Growing experience indicates that both patients and those caring for them benefit as a result.
If your patients have trouble finding your notes, you can suggest that they visit whereismymedicalrecord.org, a collaboration between OpenNotes and Ciitizen.
In a recent large study, more than 95% of patients with diverse educational histories and socio-economic circumstances report understanding their notes well.8 Even if patients don’t understand everything, they indicate strongly that this type of transparency and partnership is valuable to them. It sends a strong message about inclusivity, builds trust, and turns patients into active safety partners. Moreover, open and honest communication can help decrease litigation, as demonstrated repeatedly in studies addressing medical error disclosure.
In several studies, more than 60 percent of patients who have read notes reported that the availability of open notes would influence their future choices of doctors and health plans.
As of Fall, 2020, more than 250 health organizations around the country had chosen to offer open notes to more than 50 million patients registered on their portals.
Under the new Interoperability and Information Blocking Rule, all health systems in the United States must be sharing open notes:
- With patients, since April 15, 2021, and
- With a 3rd party application (“app”) of a patient’s choosing (e.g., downloaded to a smartphone) by October 6, 2022
The Interoperability and Information Blocking Rule will be enforced by the Office of the National Coordinator for Health IT (ONC) for electronic health record (EHR) vendors, and by the Centers for Medicare & Medicaid Services (CMS) for health systems and providers.
Individuals with less than high school education, and those who do not usually speak English at home, or are nonwhite, older, or Hispanic are not as likely to register on patient portals and are therefore less likely to read their notes. However, in repeated studies, when such patients do get to read notes, they're those most likely to report benefits from note reading.9 Importantly, safety net institutions around the country have both been participating increasingly in the OpenNotes movement and offering favorable reports.
In advance of open notes, clinical staff often anticipate changes to workflow and workload. However, this anxiety appears to be misplaced.
None of the more than 250 organizations that implemented open notes prior to November 2020 reported a significant increase in visit time with patients, or in e-mail traffic. In fact, some organizations reported a decrease in e-mail, quite possibly because patients are able to resolve confusion or forgetfulness by reading their notes.
Some organizations acknowledge there are poor documenters in their workforce and anticipate that these individuals will have to change their practice to come into closer line with peers. We receive reports that sharing notes has helped practices and individuals resolve long term problems.
Patients generally respect their provider’s time, and most doctors report little, if any, impact on their daily practice. Indeed, many in the initial study reported forgetting they were participating once it was underway. However, in recent surveys, about 1 in 3 doctors report taking more time to write notes.11 We do not have independent verification of such reports.
In several studies, a majority of doctors report they do not change the way they write their notes. However, as they gather more experience with sharing notes, some clinicians report their writing does change and that, overall, it has improved.
In general, patients do not expect doctors to write notes in layperson language. They’re not bothered by terms they don’t understand. They report researching terms, preparing better questions for clinicians, and in general feeling fortunate to have a window into more information about their health. Nevertheless, the following suggestions may help maximize the educational potential of notes.
- Briefly define medical terms when feasible.
- Patients may benefit from the list of common abbreviations on Medline Plus, where they may also look up medical terms or diagnoses.
- Incorporate lab or study results into your notes to give patients the full picture.
- Include educational materials or links to trusted content for your patients.
- Be mindful of sensitive topics, and remember patients always have rights under HIPAA to access their record.
For further suggestions, you may wish to review “Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects,” published in The American Journal of Medicine. This paper suggests 15% to 20% of clinicians should begin making modest changes in their approach to medical records.12 While these changes are typically small, some clinicians do report spending more time in documentation after implementing note sharing.
To help patients better understand their notes, documentation best practices are emerging, including the following:
- Avoid abbreviations. For example, “SOB” does not mean Shortness of Breath to most patients!
- Avoid language that may seem judgmental, such as “noncompliant” and “unreliable.” These observations are better off documented behaviorally, rather than using an adjective to describe a patient, e.g., “Patient reports he did not the take medications as suggested.”
- Avoid copying and pasting information into a note. Both patients and clinicians often take umbridge at such practice.
- Use plain language.
- Sign notes in a timely manner.
Overall, most organizations report such changes (with the exception of long-standing “timely signing” challenges) can be integrated into workflow in as little as 4 to 6 weeks.
Download “Suggestions for implementing open notes in clinical practice” for example responses to common situations.
Some patients may not benefit from reading notes. You can compare open notes to a “medicine” designed to be helpful for most, but inevitably harmful to some, with “side effects” and “contraindications” to consider. If you believe accessing a specific note may harm a patient, you can consider using an EHR mechanism to “block” a note (if available), or talk to an institutional representative on how to write a “private” note. Remember that HIPAA almost always entitles patients to obtain copies of their complete medical records, including such private notes. Therefore, independent of open notes, it’s best to write notes with the ongoing understanding that patients may read them.
The Interoperability and Information Blocking Rule that took effect in April, 2021, does document situations in which a patient’s health information can be blocked (or hidden) from view in the online patient portal. Focusing primarily on preventing potential harm and assuring appropriate privacy, these are termed Exceptions. Unless one of the Exceptions applies, clinical notes must not be blocked. Learn more about the Interoperability and Information Blocking Rule here.
Consider how you want to document sensitive topics, including mental health and illness, obesity, substance use, sexual history, potential elder, child or spousal abuse, driving privileges, or suspicions of life-threatening illness. This is not a new dilemma, but it gains urgency in an era of shared visit notes.
- Unless you believe a conversation might harm your patient, a good rule of thumb is to write about things you discussed, and conversely, to talk about content you’ll write about with your patients. Many clinicians follow this practice, and some dictate or type notes with their patients present. If you have concerns about how to document encounters that may relate to potential litigation, it’s best to contact a risk manager.
- Although it’s natural to want to curb or avoid some challenging conversations with patients, they often benefit from direct dialogue. For example, when a clinician becomes concerned about dementia, malignancy, or impaired driving, chances are good the patient or family members are already worrying about these possibilities. They may find a balanced discussion helps with anxiety they may otherwise hold alone.
- Furthermore, providers in the initial open notes study found that when patients read notes about obesity or substance abuse it motivated some of them to work hard at difficult behavior changes. Patients reported that “seeing it in black and white” made it more real. As an overarching strategy, promoting transparency may encourage more open and active communication in these difficult areas. But sensitivity to changing usage and cultural issues is, of course, important. As an example, “obesity” is a challenging term for some, especially if an individual has experienced it as stigmatizing.
- Without a doubt, documentation of “sensitive topics” warrants more research. We have a lot to learn about eliciting and responding to patient preferences and how documentation affects desired health outcomes. In the meantime, try sharing stories about open notes — good and bad — in case discussions or other appropriate settings.
Few patients report being confused, they look things up when they are, and trust may increase as a result of reading notes
We tend to underestimate how resourceful patients are. When they want an answer because of language in a note they find confusing or new, they tend to find one, whether through Google, friends or relatives, or a visit to a library. Contrary to our initial expectations, they tend not to turn to their providers for such information, at least not initially.
Overall, open notes appear to send a strong message about transparency and inclusivity. Patients often report they trust their clinician more. Reviewing notes can also turn patients into active safety partners. Moreover, open and honest communication can help decrease litigation, as demonstrated repeatedly in studies addressing medical error disclosure.
Open notes may stimulate scrutiny of often long-standing coding practices. Electronic health records (EHRs) serve multiple purposes, including clinical documentation, quality measurement and review, and justification for levels of billing. Patients occasionally report reading about activities they do not recall being performed,16 or exaggerated estimates of time spent in a visit…all of which can (rarely) lead to accusations of up-coding.
Some clinicians report that terms they use, such as “noncompliant,” lead to higher reimbursement. Others may use templates for clinical documentation but forget to uncheck/remove services they have not performed. Patients reading these notes may request alterations that could affect reimbursement due to coding changes.
No systematic analysis of the effects of open notes on liability exists, but after a decade of experience in diverse settings there are some inferences.
- We know of no individual instances of litigation following a patient taking exception to a note, and we have not heard of any among the more than 250 institutions that adopted open notes voluntarily (prior to the federal rules) turning back.
- Other forms of transparent communication in health care, such as disclosure of medical error, suggest that open and honest communication may decrease lawsuits.17
- Some providers list improved patient safety as the ‘best thing’ about open notes.
For specific concerns about how to document something in your notes, or if an error has occurred with clinical consequences, we suggest contacting a clinical supervisor, administrative colleague, and/or risk management officer.
Importantly, the 21st Century Cures Act rules specify that content related to civil, criminal, or administrative litigation is not required to be released.
The single most important factor when it comes to liability is trust. Our research shows that easy access to notes builds trust, even when errors are noted and corrected.
Evidence thus far suggests that requests for changes to the medical record via traditional channels will not increase following implementation of open notes. If your organization is successful in registering patients for the portal and educating patients on its features, patient requests for copies of their medical records may decrease after implementation.
Organizations that partner with internal marketing and communications departments to promote access to notes have seen a decrease in formal record requests. However, without active communication efforts about the patient portal and open notes functionality, requests for medical record copies will likely remain unchanged.
What about patient-perceived errors in the medical record? When patients have access to and read their clinical notes, they can find and report mistakes. Most often, errors patients report as being serious include inaccurate descriptions of diagnosis, mistaken medical history, or inaccuracies about medications, allergies, tests, procedures, or results.10 Systems can be put into place so that these errors can be acknowledged and addressed; a referral to a Health Information Management (HIM) committee is rarely needed. And patients trust their clinician even more after reporting errors that are subsequently corrected.
Multiple factors are associated with, or lead to clinician burnout. They include exhaustion, stressful and inefficient work environments, increasing documentation burdens, objectionable policies, and a sense of loss of control, all of which lead to a sense of powerlessness.18
While some experts cite EHR platforms in themselves as major contributors to burnout, others suggest that the ever-increasing documentation that payers demand is primarily to blame. They note that doctors using the same EHRs in accountable care organizations or in other countries generally don’t blame the EHR for burnout.19
There is no evidence that open notes as such lead to burnout, but these days, anything associated with electronic records can elicit strong emotions among harried clinicians. Moreover, any change in practice can irritate raw nerves.
In our studies and those of others, clinicians approach open notes with apprehension, but after some experience, a large majority are pleased with their effects and would recommend them to colleagues.
While some patients may contact clinicians with comments or questions after reading their notes, experience to date suggests this is uncommon. Moreover, many health professionals find that giving patients the ability to respond to the notes improves both patient care and satisfaction. And some patients report contacting clinicians less when they have ready access to their notes.
If your patients have trouble finding your notes, you can suggest that they visit whereismymedicalrecord.org, a collaboration between OpenNotes and Ciitizen.
As a result of the Interoperability & Information Blocking Rule, all EHR vendors that also offer secure online patient portals must make it technically possible for patients to access their notes through electronic “asks.” Even before the Information Blocking rule went into effect, most major EHR vendors (e.g., Allscripts, Cerner, Epic, and Meditech) enabled sharing clinical notes through patient portals at no additional cost.
Technology aside, open notes requires human resources from internal IT staff. Open notes implementation is often seen as part of an existing organizational work plan for EHR updates, patient portal recruitment, and/or patient engagement initiatives.
For a detailed example of an implementation process, a summary of the 2016 University of Washington open notes rollout is available as an open access article through AHIMA’s HIM Body of Knowledge.20
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