People with Cancer Say Access to Their Clinical Notes Is Valuable

November 18, 2020, by NCI Staff

People with 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.

Doctors, nurses, and other health care providers create these notes for patients’ electronic medical records to document important information, including conversations with patients. The notes may include test results, diagnoses, and treatment options.

In recent years, a growing number of hospitals and health care systems have granted patients access to these notes, which are known as “open notes” once they have been made available to a patient. And beginning in April 2021, a new federal rule will help to increase patients' access to their clinical notes. [See Box.]

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. 

“Not all patients will read their notes, but they like having the option,” said Salmi, who, along with several other members of the study team, is part of the OpenNotes project.

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. 

“The difference in views of some of the clinicians and the patients with cancer is not surprising,” said Gurvaneet Randhawa, M.D., M.P.H., of the Healthcare Delivery Research Program in NCI’s Division of Cancer Control and Population Sciences (DCCPS), who was not involved in the study.  
 
“Asking a clinician to share their notes with the patient is a relatively new practice and goes against traditional practice,” said Dr. Randhawa. “As a result, one might expect that some clinicians would be less enthusiastic about sharing their notes with the patients.”  

But many patients believe that being able to review clinical notes can help them to better understand their care, according to the researchers. 

“Many people are nervous going to the doctor, and it can be difficult to remember what the doctor said during a particular visit, especially when you’re getting bad news,” said Salmi, who is herself a survivor of brain cancer. “For patients who do not take notes during a doctor visit or are feeling overwhelmed, clinical notes can be meaningful.” 

Focusing on Patients with Cancer and Their Clinicians 

In recent years, more than 250 health systems in the United States have begun to share clinical notes with patients, according to the OpenNotes database.

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. 

“When we have presented to audiences of patients, they have been very positive about the idea of having access to more information in their records, but oncologists as a group have expressed more hesitation,” Salmi said. 

“With the new study, we wanted to see if we could learn more about this disconnect or where their views align,” she continued. 

To explore this question, the researchers analyzed data from two online surveys of clinicians and patients at three health systems—in Boston, Seattle, and rural Pennsylvania—in which notes from clinicians across all outpatient specialties had been shared for at least 4 years. 

The analysis included responses from 96 clinicians (including nearly 50 physicians) who worked in the field of oncology and from approximately 3,400 patients with cancer. 

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.

Addressing Concerns among Clinicians

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.

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. 

But whereas 44% of the clinicians said that patients with cancer would be confused by notes, only 4% of the patients reported feeling confused after reading their notes. 

There may be legitimate concerns among clinicians about patients not understanding the notes, said Dr. Randhawa. “One solution is to write notes in plainer language. Alternatively, we need to provide patients with digital tools that make better sense of the notes,” he added.

Another common concern among clinicians has been that patients who read their notes will have questions that require time-consuming responses, said Salmi. But this concern was not borne out by the survey results. Just 23% of patients with cancer said they had contacted their doctor’s office about something in their notes in the last 12 months, and 89% of oncology clinicians reported that such contacts were infrequent (40% were never contacted, and 49% were contacted less than once per month).

Better Communication Needed

The new study addresses one part of a broader need for better communication, education, and support of patients with cancer and their caregivers, according to Dr. Randhawa.

“This is particularly important for someone who is newly diagnosed with cancer and may not fully understand—or be able to absorb—a large amount of information about their disease,” he said.

A diagnosis of cancer and treatment for the disease “is often overwhelming for patients,” Dr. Randhawa continued. “Better communication by giving patients access to their clinical notes is helpful but by itself is not sufficient.”

An additional need, Dr. Randhawa continued, is to make the cancer care patient-centered. “You have to understand the patient’s care goals and needs, which may change over time, and then use the knowledge to design a care plan,” he said.

“This requires good communication between the patient and the oncology care team and adapting the care plan based on the patient’s wishes,” he added. “It also means there should be shared decision making between the patient and provider.”
 
Previous research from the OpenNotes project suggests that open notes can help to strengthen the relationship between patient and clinician, according to Salmi. “We’ve found that there’s something about the offer of being transparent that increases the trust of patients in their clinicians,” she said.