Tools for Clinicians

On Sharing Notes with Patients

U.S. health care institutions, from large medical centers such UM and Jackson to small private practices, are making a fundamental change in the way we communicate with patients. We are now required to make it easy for patients to see and save progress and consult notes and other documentation from the electronic health record. This page answers commonly asked questions about the new rule prohibiting "information blocking" and provides a number of other resources and references.

Why this change?

There are several reasons why the Office of the National Coordinator (ONC) for Health Information Technology has made this requirement:

  • Patients want to access their health records the same way they access other personal information held by institutions. Patient-rights organizations have long advocated for more transparency in health documentation; one such, OpenNotes, promotes and studies “transparent communication in healthcare. We help patients and clinicians sharemeaningful notes in medical records.”[1]

  • There is solid evidence that patient access to notes about them improves outcomes and reduces some clinical errors.[2]

  • This is merely an incremental change over the previous situation. That is, under HIPAA, patients were always supposed to have access to their records, but the process of actually getting access was onerous, cumbersome and an ordeal for both patients and institutions. The law already required that patients be able to see their records. This change makes it easier.

Still, the change will be unsettling for some. This document / webpage is intended to support adherence to the requirement and to assuage concerns about it.

What is the origin of this change?

Some date the “open notes” initiative to 1973 when an article in The New England Journal of Medicine argued that “Four serious problems (maintaining high quality of care, establishing mutually satisfactory physician/patient relations, ensuring continuity and avoiding excessive bureaucracy) could be alleviated, in part, if patients were given copies of their medical records.”[3] Thereafter, a core value of the Healthcare Insurance Portability and Accountability Act (HIPAA) held that patients should have access to their own information even as institutions were obliged to protect that information. HIPAA was signed into law in 1996; its final Privacy Rule was passed in 2003. Put differently: letting patients see their records was already a legal requirement.[4]

Won’t people change documentation if patients can read it?

Many clinicians already wrote notes with the expectation they would be seen by patients. There is very rarely a good reason for a patient not to see a clinical note.

There is a growing effort to study whether patient access alters documentation. Findings so far include increased efforts to avoid seeming critical of patients and to use more encouraging language.[5] That study found 22% of physicians regarded their notes as less valuable when patients could access the notes; there appears to be no empirical basis for this view. Indeed, one study found that 73.3% of respondents “agreed that making notes available to patients was a good idea.”[6]

There is a growing body of evidence suggesting that open access does change documentation – for the better: “Convenient electronic access to clinical notes and changes to documentation that improve the clarity of the notes—for example, using plain language to provide brief but understandable explanations for tests and treatments—may boost patient comprehension, recall, and adherence to medications and care plans.”[7]

Moreover, there is some reason to believe that at least some of our notes were not as good as they could have been in the first place. How many notes are bloated with text copied and pasted from previous notes, full of specialty acronyms and, well, poor grammar and spelling? How many times have you acquired a picture of a patient’s condition from notes only to revise it significantly after talking to a colleague?

The American Medical Association[8] and the OpenNotes organization[9] provide FAQs on this issue.

Are there any exceptions to the new rule?

The new law provides for the use of clinical judgment if it is believed a note might, if read by a patient, be atherapeutic or endanger another person. Called the “preventing harm exception,” it provides that one can do what is “reasonable and necessary to prevent harm to a patient or another person, provided certain conditions are met.”[10] There are other technical exceptions.

Can I get help managing this change?

A number of resources are available. One particularly good one provides guidance on language use.[11]

Others are exploring how to “Create notes with patients.”[12]

The Open Notes Website addresses many clinicians’ concerns.[13]

APPENDIX: History of the medical record

The oldest known medical records are contained in the Kahoun Papyrus.[14] These records were apparently made to provide clinical advice. Thereafter,

  • 5th century BCE: Hippocratic cases, used for education

  • 17th century: Thomas Sydenham, synthesis of cases into disease profiles

  • 19th century: Laennec's invention of auscultation changed focus of case history from patients' observations to physicians'

  • Pierre Louis' analysis of bloodletting cases leads to the "numerical method" ... i.e., cases were used for research

  • 1793: The Board of Governors of the Society of the NYH approved the first hospital rules ... The apothecary prepared and delivered a monthly report of the "Names and Diseases of the Persons, received, deceased or discharged in the same, with the date of each event, and the Place from whence the Patients last came." (Siegler 2010). 

  • 19th-20th centuries: use of cases in medical education

  • 1910: Hospital education - Massachusetts General Hospital begins weekly conferences to review cases and analyze "clinical logic" of patient management (comparing clinical and pathologic analyses). In 1915 MGH begins publishing the cases and analyses for subscribers

  • 1918: "To a great many of us, these cases are the only postgradute work we have at the present time."

  • 1923: Cases and analyses became a regular feature of the Boston Medical and Surgical Journal (renamed in 1928 as the New England Journal of Medicine) (Reiser 1991).

It took several generations to reduce and then eliminate the dangers of hand-written chart notes. We once had colleagues who took some pride in being illegible, though that subsided after it was documented that bad handwriting was a patient safety issue. With the initially slow adoption of the electronic health record (EHR), we have reduced medical error.

Additional Resources

Footnotes

[1] https://www.opennotes.org/onc-federal-rule/; cf. https://www.healthit.gov/curesrule/download
[2] Bell SK, Delbanco T, Elmore JG, et al. Frequency and Types of Patient-Reported Errors in Electronic Health Record Ambulatory Care Notes. JAMA Netw Open. 2020;3(6):e205867. doi:10.1001/jamanetworkopen.2020.5867
[3] Shenkin BN, Warner DC. Giving the Patient His Medical Record: A Proposal to Improve the System. N Engl J Med 1973;289:688-692.DOI: 10.1056/NEJM197309272891311. Quoted here.
[4]  https://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html
[5] DesRoches CM, Leveille S, Bell SK, Dong ZJ, Elmore JG, Fernandez L, et al. The Views and experiences of clinicians sharing medical record notes with patients. JAMA Netw Open. (2020) 3:e201753. doi: 10.1001/jamanetworkopen.2020.1753
[6] Richards S, Carlson K, Matthias T, Birge J. Perception versus reality: Does provider documentation behavior change when clinic notes are shared electronically with patients? International Journal of Medical Informatics 2021;145, https://doi.org/10.1016/j.ijmedinf.2020.104304.
[7] Blease C, Torous J, Hägglund M. Does Patient Access to Clinical Notes Change Documentation?  Frontiers in Public Health 2020;8:578. https://www.frontiersin.org/article/10.3389/fpubh.2020.577896. DOI: 10.3389/fpubh.2020.577896
[8] https://www.ama-assn.org/practice-management/digital/new-information-blocking-rules-what-doctors-should-know
[9] https://www.opennotes.org/effects-of-opennotes-faqs/
[10] https://www.psychiatry.org/psychiatrists/practice/practice-management/health-information-technology/interoperability-and-information-blocking
[11] Matson, Christine C. MD; Beck, Lisa A. MEd; Rajasekaran, Senthil K. MD Using Language That Reflects Who Is the Center of Our Care, Academic Medicine: September 2019 - Volume 94 - Issue 9 - p 1400 doi: 10.1097/ACM.0000000000002799
[12] https://www.opennotes.org/ournotes-professionals/
[13] https://www.opennotes.org/
[14] “Dating from Egypt’s Middle Kingdom, it is about 3,800 years old and deals mostly with women’s health, obstetrics, and gynecology.  Mostly, it gives advice. In this respect, this papyrus scroll therefore likely contains the first practice guidelines.” (Goodman KW. Ethics, Medicine and Information Technology: Intelligent Machines and the Transformation of Health Care. Cambridge: Cambridge University Press, 2016.)