November 28, 2022

OPEN NOTES: OPEN CONVERSATIONS?

“I don’t like being called, chunky!” “What does it mean when you wrote ‘f/u in 3 months’?!!!” That is not the way a doctor should talk about a patient! How rude!” “There are many things in my chart that are wrong!” These are actual comments by patients about information written in their charts. Now that more are reading what we enter into their chart, how we say it has many patients upset, confused, and concerned. The physician’s goals are accuracy, appropriate detail, and concise efficient information documenting the visit. But at times the process is less than perfect. Ah, the beauty of open notes! More than likely this is just more in the evolution of physicians’ documentation of the medical lives of their patients. And we have a ways to go to get it right.

The process of physician documentation likely began thousands of years ago with the Epidemics.¹ The term does not refer to disease in a community as we know it, but instead the seven books which make up the Epidemics and date to perhaps the third century BC, containing individual case histories. At the time, Erotianus, a physician or grammarian, attributed the Epidemics to Hippocrates but this is not clear. What does appear to be the case is they are the first observations and descriptions of real-life individuals which survive anywhere in the world. For example, a woman in the third book who had delivered twin females was noted on the sixth day after delivery to have “urine black, thin and after brief intervals, oily again like olive oil. Bowel passed much which was thin and disorderly.” In the sixth book c. 360 BC, we learn of “Phaethousa, wife of Pytheas, keeper of the household, having borne several children previously, she then had pains and redness at her joints; when this happened, her body became masculinized and was hairy all over and she grew a beard, and her voice became rough and hard and although we busily did everything to try to draw down her period, it did not come, and she died.”

Fast forward a few thousand years and we agree medical records have advanced significantly.² Remember paper charts? That seems like eons ago, right? Entries were sometimes illegible, brief, and containing a smattering of detail. Some charts were large and bulky with lab and imaging results, consultation reports, and more stuffed in no particular order. Pages falling out? No problem…just put them back wherever they might fit thus creating a rather disorderly record with much disorganization. In the hospital, written notes were typically spiral bound. Pages could easily be removed by just opening the binder as a notebook and replacing them. Either way, patients didn’t seem to have any interest in what was written in them.

In 1996, the Health Insurance Portability and Accountability Act (HIPAA) was passed, and this was a beginning point in the process of the patients’ ability to review chart notes. The law allowed patients “the right to review their medical records and to request that corrections and additions be made to the record.”³ However, still not much was happening from a patient perspective to do this. Some reasons for this may have been lack of awareness, reluctance to upset physicians, and obstacles such as technical issues and misplaced security and privacy.⁴ In 2010, Beth Israel Deaconess Medical Center in Boston, Geisinger Health System in Pennsylvania, and Harborview Medical Center in Seattle began an exploratory study. One hundred and five primary care doctors invited over 13,000 of their patients to read their notes via secure online portals.⁵ Two years later, the Annals of Internal Medicine published the results. The major takeaways: “doctors report little change in workload, and patients overwhelmingly approve of note sharing as a practice.”⁶ In 2016, the 21st Century Cures Act (Cures Act)⁷ made sharing electronic health information the expected norm in health care by authorizing the Secretary of Health and Human Services (HHS) to identify "reasonable and necessary activities that do not constitute information blocking."^18,21 Office of the National Coordinator for Health Information Technology’s (ONC's) 2020 Cures Act Final Rule established information blocking. On April 5, 2021, the Cures Act required all U.S. health care systems to electronically share clinicians’ visit notes with patients at no charge.^15,17,18,21

Subsequently, many patients began to voraciously read their charts and were bemused.^19,22 Perhaps the COVID-19 pandemic helped propel this with more people at home with time on their hands and working virtually. The patient chart was simply a few clicks away from everything else. But the language of physicians is not readily understood by the lay public. Terms we use often, such as SOB, obesity, declines, refuses, noncompliant, unkempt, malodorous, OD, and so many more have led some to think we are talking about them in negative ways. When you realize there are over 104,000 medical abbreviations in use and many with a variety of meanings⁸…well, even doctors can get confused. For example, CTX has over 71 abbreviations or acronyms in six categories.⁹ Between ceftriaxone, Cytoxan, cefotaxime, cortex, contractions, and so many more, there is not only confusion, but the potential for significant errors to occur. Just the other day I was reviewing a neurology consultation regarding a patient admitted with a possible seizure. The major conclusion of the consult was to hold an AED until information returned of note from the EEG or brain MRI. Huh? Why was a neurologist writing about an automated external defibrillator? I reviewed the chart to see if there were any cardiac issues, such as documented dysrhythmias, abnormal echocardiogram findings, cardiology consultation…none were to be found. Then after a bit of digging on line, I realized the neurologist was probably talking about holding an antiepileptic drug. Is AED a standard abbreviation for that?

What really got me rather irked recently is that some feel we should make the patient chart more friendly for nonmedical personnel. Writing in the American Journal of Medicine, Klein et al.¹⁰ have given suggestions to make notes more readable and less confusing, recommending writing “shirt untucked” (rather than “disheveled”), spelling out SOB, using “false alarm” (instead of false positive), “enlarged heart” (as opposed to “cardiomyopathy” and more).^10-12 Seriously??!!! Are we to turn into fashionistas and even sommeliers? Isn’t the language we use our language that, for the most part, we have honed for years? Taking the time to translate what we have been writing for patients seems to make the workload and EMR charting even more onerous than it continues to be. Should we go further and criticize what patients are wearing? “You would do well wearing a double-breasted blazer and perhaps a purple collared jacket with geometric paneling. It will help hide your jaundice.”¹³ “Or the motif of nylon technical material pairing a black nylon jacket – featuring detachable sleeves and corset gathering would help you appear less hefty.” How about instead of the fruity odor of the breath of a patient with DKA being described as “balanced and earthy and long en bouche!”²⁴ Or fetor hepaticus as “musty with a hint of resin and big and rough with a grippy, structured tannin.”²⁴ But what happened to equity and inclusion? And what about the patient without a computer or adequate or any broadband access? These are difficult but important questions and answers that are needed sooner than later! And what about the need to hold back some information so physicians can review it before it appears in patients’ hands? There are “exceptions” and notes can be withheld if it is believed a patient will harm another person or themselves as a result of reading the information or If they need to protect the security of another person’s electronic health information (e.g., a mother’s health information in a child’s record).^14,15

What about referring to physicians as “actors” within information blocking? And what about fines up to a million dollars for some entities as defined by the Department of Health and Human Services (HHS) for such blocking (for individuals the fines are not yet well-defined)?²³ Allowing physicians more time to review data before it is released to patients led California to pass Senate Bill 1419,¹⁶ thus extending California Health and Safety Code §123148. These legislative actions allow physicians additional time to interpret potentially life-changing test results before electronically releasing them to the patient; providing additional legal protections for sensitive data, and includes teen mental health and reproductive information. The bill and code forbid disclosure of HIV test results, including viral load and CD4 count test results by secure internet website or other electronic means. Also prohibited are release of the presence of hepatitis antigens and information about illicit drug use. Test results related to routinely processed tissues and imaging scans that reveal a new or recurrent malignancy are also forbidden. The MSD Government Affairs Committee has been discussing this issue and you will hear more in the days ahead!

At the end of the day, it is all about having a relationship with patients, spending time being shared partners in health, and being clear about our messages - both verbally and in the EMR. The last thing we need is to spend added time making sure our words do not ruffle any feathers. That being said, I don’t think we need to change our note style. We need to observe, listen, feel, and report as honestly as always. And if a patient has stained/untucked clothing, gained or lost weight, or the like….well, maybe it is because we have all become a bit more relaxed these days…and that’s a good thing! So encourage them to read the notes we write, tell us of inaccuracies, or things with which they may disagree. Let’s have a conversation! When clarity is in the forefront, we are all winners! TU4R & HAGD &HH!!

Matthew J. Burday, DO

President

[email protected]

References:

1. Lane, R. What the World’s First Medical Records Tell Us About Ancient Life ‹ Literary Hub (lithub.com); December 11, 2020.
2. A Brief History of the Medical Record | CareerStep; posted June 23, 2016.
3. Esch T, Mejilla R, Anselmo M, et al. Engaging patients through open notes: an evaluation using mixed methods. BMJ Open 2016;6: e010034. doi:10.1136/ bmjopen-2015-010034.
4. Strategy 6C: OpenNotes | Agency for Healthcare Research and Quality (ahrq.gov)
5. Our history: fifty years in the making.  OpenNotes®. Accessed November 13, 2022. https://www.opennotes.org/history/
6. Delbanco T, Walker J, Bell SK, Darer JD, Elmore JG, Farag N, Feldman HJ, Mejilla R, Ngo L, Ralston JD, Ross SE, Trivedi N, Vodicka E, Leveille SG. Inviting patients to read their doctors' notes: a quasi-experimental study and a look ahead. Ann Intern Med. 2012 Oct 2;157(7):461-70. doi: 10.7326/0003-4819-157-7-201210020-00002.
7. PUBL255.PS (congress.gov) Cures Act.
8. Sidik, S.“Open Notes” is the Law. Now What? - Proto Magazine; published Jan. 12, 2022
9. CTX - What does CTX Stand For in Medical & Science ? (acronymsandslang.com)
10. Klein J, Jackson S, Bell S, et. al. Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects. Am J Med. Doi: DOI
11. Klein_notes-tip_toolkit.pdf (opennotes.org)
12. 'Patient is a poor historian': How doctors' notes can confuse—and hurt—their patients (advisory.com); published October 6, 2021 and republished October 19, 2022; accessed November 13, 2022.
13. White, R., Demarco, N., Tyner, A.:New York Fashion Week SS23 Reviews: Tom Ford, Willy Chavarria, Puma, Eckhaus Latta, Proenza Chouler, Luar, Dion Lee and more - Catch up on all the must-see collections. (vice.com); September 14, 2022.
14. Miralles, P; DesRoches, C.; Brown, P.:Sharing Clinical Notes With Patients: A New Era of Transparency in Medicine | Adolescent Medicine | AMA 11) STEPS Forward | AMA Ed Hub (ama-assn.org) June 17, 2021; accessed November 13, 2022.
15. Federal Rules Mandating Open Notes last updated September 15, 2022 and accessed November 13, 2022
16. California Passes Senate Bill 1419 Law to Revise How Electronic Medical Records are Released – Policy & Medicine (policymed.com).
17. Open Notes in Healthcare: The Good, the Bad, and the Ugly of the Cures Act | The Doctors Company July 2021.
18. Strategy 6C: OpenNotes | Agency for Healthcare Research and Quality (ahrq.gov)-page created May 2020 and revisited March 2021.
19. Gopalan, A; Weighing the Good and Bad of Open Notes; LDI Health Economist; Feb. 2013.
20. Information Blocking | HealthIT.gov. 
21. Preston, E. Clinicians open their notes to patients in grand experiment in medical care (statnews.com); June 18, 2021.
22. Office of Johns Hopkins Physicians: OpenNotes: Bonus or Burden? September 1, 2016
23. Hut, N. Expanded information-blocking rules under the 21st Century Cures Act are here (hfma.org), October 4, 2022.accessed November 19, 2022
24. Krebhiel, A. What Are Tannins, Really? Wine Enthusiast. Published September 11, 2018.