Oncology Notes Pdf

[Kerby Reynolds]

Peoplewith cancer believe that having access to electronic clinical notes that summarize their doctor visits is valuable, researchers have found. Oncologists and other care providers agree that patient access to these open notes is important, although their views tend to differ somewhat from those of patients, according to survey results.

In a new analysis of data from several Web-based surveys of clinicians and patients, 70% of the clinicians who treat cancer thought that giving patients access to clinical notes was a good idea, while 98% of the patients with cancer held this view. The findings were reported in Cancer Cell on October 8.

Patients were also much more likely than clinicians to report that access to their clinical notes could have important benefits, such as helping them be more prepared for their appointments, the researchers found.

The nearly unanimous approval by the patients with cancer surveyed is consistent with the views of other patients in prior surveys, according to study investigator Liz Salmi of Beth Israel Deaconess Medical Center.

The project, which was started by health professionals at Beth Israel Deaconess Medical Center and Harvard Medical School in 2010, promotes patient access to clinical notes and conducts research on the effects of sharing these notes on communication among patients, families, and clinicians.

Patients who have read their notes have told researchers that they had a better understanding of their health and medical conditions, were better prepared for their visits, took better care of themselves, and were more likely to take their medications as prescribed.

Previous studies have shown differences in the attitudes of patients and clinicians overall after open notes have been implemented, but little has been known about the views of patients with cancer and their clinicians specifically.

In fact, the decision to undertake the current analysis was based, in part, on responses that Salmi and her colleagues have received from oncologists during presentations on open notes at professional meetings.

Clinicians participating in the study had written at least one note that had been opened by a patient in the year prior to the survey. The majority of patients were older than 65, white, female, had more than a high school education, and spoke English as their primary language.

Patients in the analysis were much more likely than clinicians to think that open notes could have important benefits. For example, 28% of the clinicians agreed or somewhat agreed that notes could help patients be more prepared for their visits, whereas 56% of the patients with cancer viewed open notes as important for preparing.

The 21st Century Cures Act regulation on access to health information, which goes into effect April 5, 2021, is designed to make access to this information free and convenient for patients, such as through a smartphone app. The clinical notes that must be shared include:

Some of the questions in the survey addressed known concerns among clinicians, such as concerns about patients not understanding the notes, which are not written for lay readers and may include technical language.

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Purpose: Electronic medical records increasingly allow patients access to clinician notes. Although most believe that open notes benefits patients, some suggest negative consequences. Little is known about the experiences of patients with cancer reading their medical notes; thus we aimed to describe this qualitatively.

Methods: We interviewed 20 adults with metastatic or incurable cancer receiving cancer treatment. The semistructured qualitative interviews included four segments: assessing their overall experience reading notes, discussing how notes affected their cancer care experiences, reading a real note with the interviewer, and making suggestions for improvement. We used a constant comparison approach to analyze these qualitative data.

Results: We found four themes. Patients reported that notes resulted in the following: (1) increased comprehension; (2) ameliorated uncertainty, relieved anxiety, and facilitated control; (3) increased trust; and (4) for a subset of patients, increased anxiety. Patients described increased comprehension because notes refreshed their memory and clarified their understanding of visits. This helped mitigate the unfamiliarity of cancer, addressing uncertainty and relieving anxiety. Notes facilitated control, empowering patients to ask clinicians more questions. The transparency of notes also increased trust in clinicians. For a subset of patients, however, notes were emotionally difficult to read and raised concerns. Patients identified medical jargon and repetition in notes as areas for improvement.

Conclusion: Most patients thought that reading notes improved their care experiences. A small subset of patients experienced increased distress. As reading notes becomes a routine part of the patient experience, physicians might want to elicit and address concerns that arise from notes, thereby further engaging patients in their care.

Starting November 2, all patients in the United States will have immediate access to clinical notes and thus will be able to read their doctors' writings, as well as test results and reports from pathology and imaging.

The 21st Century Cures Act mandates that patients have fast, electronic access to the following types of notes: consultations, discharge summaries, history, physical examination findings, imaging narratives, laboratory and pathology report narratives, and procedure and progress notes.

But this federal mandate, called "open notes" by many, is potentially confusing and frightening for patients, say some physicians. Others worry that the change will increase workload as clinicians tailor notes for patients and answer related questions.

The law means that inpatient and outpatient notes will be released immediately and that patients will have immediate access to testing and imaging results, including results from sexually transmitted disease tests, Pap tests, cancer biopsies, CT and PET scans, fetal ultrasounds, pneumonia cultures, and mammograms.

Lin summarizes the experience at the University of Colorado Cancer Center, which has allowed patients to have access to oncology notes for the past 5 years: "No issues and highly appreciated by patients. We have nothing to fear but fear itself."

"This illustrates the point that it's a new thing that physicians aren't used to doing. They've traditionally written notes for the benefit of their colleagues, for billing, for their own reference," says Scott MacDonald, MD, an internist and electronic health record medical director at UC Davis Health, tells Medscape Medical News.

Liam Keating, MD, an otolaryngologist in Martinez, California, recalls that he once wrote "globus hystericus," and the patient wanted to sue him for saying that the patient was hysterical. "I now just code 'Globus' (if I don't jump straight to LPD [lateral pharyngeal diverticulum])," he commented in response to a Medscape commentary on open notes.

"When I order imaging or send pathology specimens, I have already discussed with the patient the possibilities, including cancer, and what we will do next. Patients deeply appreciate these discussions, before they see the results," he comments in an institutional white paper issued in anticipation of the changes on November 2.

This is called precounseling, says Trent Rosenbloom, MD, MPH, director of patient portals at Vanderbilt University Medical Center, Nashville, Tennessee, which has been a pioneer in information sharing with patients. Their system does delay the release of information in the case of "complicated" results, such as from cancer biopsies, he tells Medscape Medical News.

However, Christiaan Hoff, MD, PhD, a surgeon at the Medical Center Leeuwarden, the Netherlands, wonders how important it is for the physician to be present when the patient receives bad news, including news about cancer. "We may overestimate our added value in these situations," he suggests.

"Our empathy may not outweigh" the disadvantages of the situation, and the "finer points of our explanation will often go unnoticed" by the stressed patient, he comments. Hoff was also responding to the Medscape commentary about open notes.

In that commentary, Jack West, MD, a medical oncologist at City of Hope Cancer Center, Duarte, California, was concerned about misunderstandings. Oncology is complex, and patients can struggle to understand their prognosis and planned treatment efficacy, especially in cases of metastatic disease, he wrote.

This concern is somewhat refuted by a study published October 5 in Cancer Cell. Responses to two surveys involving 96 oncology clinicians at three US centers found that almost half (44%) believed that their patients "would be confused" by open notes.

However, only 4% of the 3418 cancer patients from the same surveys reported being confused by open notes. (A majority of participants had more than a high school education, and English was their primary language.)

"Patient and clinician views about open notes in oncology are not aligned, with patients expressing considerably more enthusiasm," write the authors, led by Liz Salmi, senior strategist at OpenNotes, who has been treated for brain cancer.

The survey results echo the early experience reported from Sweden, where open notes was launched in 2012. "Patients have loved it from the beginning," says Maria Haggland, PhD, of Uppsala MedTech Science Innovation Center.

Traditionally, doctors have written notes using medical lexicon, including a lot of abbreviations and jargon for efficiency's sake. Now that patients will read the notes, will clinicians have to spell out things in lay terms, alter their writing so as not to offend, and generally do more work?

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