Should patients have access to your notes?

Sea change has swept through a cornerstone of clinical practice. Clinician notes, once penned exclusively for the eyes of providers, are becoming part of the digital conversation between patient and provider. This movement is called Open Notes, and research indicates that it’s likely here to stay.

On a high level, studies show that this radical transparency has improved patient outcomes and patient involvement in the healthcare process. However, critics cite the potential for patient misunderstanding and an increased EHR workload as reasons to press pause. Studies of Open Notes reveal a more nuanced picture.

Getting the patient involved

In the past, a patient wanting to see their provider’s notes endured wait times and incurred costs. The Health Insurance Portability and Accountability Act (HIPAA) improved access, but critics say it fell a bit short. HIPAA requires a formal request for patient records, a HIPAA patient authorization, the patient’s signature, and in some instances, a fee—all for a patient to access their own records. 

With Open Notes, patients have immediate access to their healthcare provider’s notes to utilize in the management of their treatment plan, and to share with other providers without having to wait and endure costs. 

Participating health systems make notes available to patients on secure online portals. Available information can include current symptoms and vital signs, active medications, treatments, exam findings, test results, and diagnoses. The secure portal also becomes a home to care plans, including  information about lifestyle changes, further testing, new treatments, referrals, and follow-up appointments.

Proven benefits

This mandated radical transparency has raised a few eyebrows among clinicians, but many of their concerns have dissipated with time. Open Notes is becoming normal practice and appears to improve the physician-patient relationship.

A 2020 BMJ Open study found patients across the globe believe medical transparency is their right and view access to their provider’s notes favorably. Other studies have found that Open Notes increases provider-patient trust and treatment adherence, with little disadvantage to the provider. 

For example, a 2019 BMJ analysis found that patients felt reading their provider's notes was an important part of their healthcare management. Most patients were not bothered by what they read, and many felt they benefited from it. 

Lessons from the pandemic

The COVID-19 pandemic also highlighted the benefits of Open Notes. As reported in a 2020 NEJM Catalyst report, patients may not recall telemedicine encounters as well as they would a face-to-face visit. Open Notes offered an opportunity for patients to review what they might have missed. Patients could also complete pre-visit questionnaires on their own time, allowing them to gather more information for their visits. The researchers concluded inviting patients to access their records supported patient engagement and helped clinician workflow. 

Furthermore, one 2019 Journal of Medical Internet Research study found patient portals can enable the discovery of medical errors, and improve medication adherence and provider-patient communications. The researchers note that further research might be needed to fully understand the impact of patient health portals. 

Provider concerns 

Naturally, such a sweeping change has raised some concerns among providers. However, most medical providers are generally open to sharing their medical notes with their patients. 

In one 2020 JAMA Open Network study of health professionals across many specialties, researchers found more than two-thirds supported sharing their chart notes with patients. Sixty-one percent of the health professionals also reported they would recommend the practice to their colleagues. 

Nonetheless, Open Notes introduces some potential for misinterpretation. For example, you may worry that patients may not understand what you’ve written, or that the patient may be upset or offended by what they find. Certain abbreviations or medical terminology could offend a patient, such as using the word “obese” to refer to a high BMI. The same might apply to the terminology used to document mental health.

Misinterpretation proves rare

Research shows that patients rarely misinterpret their provider’s notes. One 2019 Journal of Medical Internet Research study looked at the survey responses of 23,000 patients and found only about 3% reported being confused by a clinician’s notes and 5% reported being worried about something they read in their medical chart.

Some clinicians have also worried that opening their notes will increase their EHR workload. One 2015 BMJ analysis found about 11% of providers were spending more time creating or editing their notes. 

Finally, providers have wondered whether Open Notes may lead to more patient requests for chart revisions. There have been very few studies to date that indicate this might be a growing problem or that physicians are spending extra time updating patient charts based on patient requests.

Limiting factors

Patient access to provider notes can facilitate conversations, but there are some limitations. For example, sharing bad news or presenting abnormal test results. Fortunately, the Cures Act allows for some exceptions, including blocking a record if viewing a provider note presents substantial harm to the physical safety of the patient or someone else.

This is where adhering to care standards, and knowing a patient’s preferences, are key. For example, how does the patient wish to receive test results, in-person, via telephone, or through the patient portal? Should the provider review the test results and contact the patient via their preferred mode of communication before disseminating those results? If a patient requests test results through a patient portal, should the provider request confirmation from the patient that they have viewed and understood the information?

These considerations are just some that may prove critical for clinicians as they navigate Open Notes.

Sources 

1. OpenNotes. Reading your notes: FAQs for patients.

2. Health and Human Services Department. 21st Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program.

3. Open Notes. PatientEngagementHIT: Using Open Notes for positive impact on patient data access. 

4. Centers for Disease Control and Prevention. Health Insurance Portability and Accountability Act of 1996 (HIPAA).

5. Walker J, Leveille S, Bell S, et al. Open Notes after 7 years: Patient experiences with ongoing access to their clinicians' outpatient visit notes. J Med Internet Res. 2019;21(5):e13876. doi:10.2196/13876

6. Walker J, Meltsner M, Delbanco T. US experience with doctors and patients sharing clinical notes. BMJ. 2015; g7785. doi:10.1136/bmj.g7785

7. Dendere R, Slade C, Burton-Jones A, Sullivan C, Staib A, Janda M. Patient portals facilitating engagement with inpatient electronic medical records: A systematic review. J Med Internet Res. 2019;21(4):e12779. doi:10.2196/12779

8. Salmi L, Brudnicki S, Isono M, et al. Six countries, six individuals: resourceful patients navigating medical records in Australia, Canada, Chile, Japan, Sweden and the USA. BMJ Open. 2020;10(9):e037016. doi:10.1136/bmjopen-2020-037016

9. Leveille SG, Fitzgerald P, Harcourt K, et al. Patients evaluate visit notes written by their clinicians: a mixed methods investigation. J Gen Intern Med. 2020;35(12):3510-3516. doi:10.1007/s11606-020-06014-7 

10. Kriegel G, Bell S, Delbanco, T, et al. Covid-19 as innovation accelerator: cogenerating telemedicine visit notes with patients. NEJM Catalyst. 2020. doi:10.1056/cat.20.0154 

11. DesRoches CM, Leveille S, Bell SK, et al. The views and experiences of clinicians sharing medical record notes with patients. JAMA Netw Open. 2020;3(3):e201753. doi:10.1001/jamanetworkopen.2020.1753