Given Access, Cancer Patients Read Their Doc's Notes

But Does Reading Equal Understanding?

Nick Mulcahy

October 17, 2018

The upside of providing cancer patients with easy access to their physicians' notes far outweighs any downside, according to a new exploratory study from a major US cancer center that has embraced the "OpenNotes" movement in medicine.

There is growing momentum to provide patients with easy access to their full electronic medical records in "real time," say the study authors, led by Narek Shaverdian, MD, a radiation oncologist who was a resident at the University of California, Los Angeles (UCLA) during the study.

The Department of Radiation Oncology was one of the first departments at ULCA to adopt OpenNotes, a nonprofit initiative that encourages transparency and provides software that allows an institution's electronic medical records to be routed to a patient portal.

However, many physicians and institutions have been concerned that, with open access to these notes, "there would be more worry, more confusion, and more problems" for patients, Shaverdian told Medscape Medical News.

But the results from their study largely show the opposite.

"Cancer patients who read their physician's notes report increased trust in their physicians and better understanding of their treatments, diagnosis, and side effects," Shaverdian said.

More than 90% of the responsive study participants positively assessed these various measures.

Only small percentages of participants reported increased worry (11%), confusion (6%), and finding information they regretted reading (4%).

However, fewer than half of the study population both read the notes and completed the study's surveys, indicating that the process did not appeal to everyone.

The study was published online October 17 in Practical Radiation Oncology.

The findings from this study, which was conducted in some 200-plus patients with early-stage cancer, echo some of the results of another OpenNotes study (J Oncol Practice. 2018;14:254-258), although this other study involved patients with advanced cancer. It was conducted at Duke University, where patients automatically have access to their notes, with a few exceptions, such as mental health documentation, explained lead author Thomas LeBlanc, MD, medical oncologist at Duke University, Durham, North Carolina.

"We've overwhelmingly heard that patients like it," LeBlanc told Medscape Medical News.

However, he feels some trepidation about open access.

"Some patients seem to develop a false sense of understanding about their illness after reading their notes. This worries me quite a bit," he said.

Some patients seem to develop a false sense of understanding about their illness after reading their notes. This worries me quite a bit. Dr Thomas LeBlanc

He explained that "working hard to read notes doesn't automatically translate into meaningful understanding."

For that reason, "access to notes isn't the end goal, it's the beginning of something new and different that we need to figure out together," he commented.

LeBlanc added that the new study from UCLA adds to a sparse oncology literature: "Most of the research done in this area to date has occurred in noncancer, primary care settings. We're just starting to learn about what might be different for people with cancer."

What's in Those Opennotes?

The study led by Shaverdian was based on a two-part survey offered to 220 consecutive cancer patients undergoing radiotherapy at the UCLA Jonsson Cancer Center during 4 months in 2017.

A total of 136 (62%) patients completed the baseline survey; 88 (40%) completed the final survey after treatment.

The pretreatment, baseline survey evaluated initial interest and expectations prior to access to medical notes; the final survey determined usage of the notes and the related impact.

Before seeing notes, the majority of patients believed that open access to oncology notes would improve understanding of diagnosis (99%), treatment side effects (98%), and treatment goals (96%), as well as communication with family (99%).

After accessing notes, patients also overwhelmingly reported an improved understanding of their diagnosis (96%) and treatment side effects (94%), and they felt more reassured about their treatment (96%).

Patient age, sex, or specific cancer diagnoses were not predictive of experiencing the above-noted negative effects from reading the notes, report the authors.

Shaverdian, who is now on the faculty of Memorial Sloan Kettering Cancer Center in New York City, explained that the OpenNotes contain "exactly what we are typing into the EHR [electronic health records] during a clinic visit."

The notes detail the medical decision making, the related risks and benefits, and the discussion that happened in the clinic.

The notes are a "narrative" that are distinguished from, for example, a radiology report, which is a "raw" document that is mostly limited to brief notations and data about changes in anatomy and thus lack the patient's wider story, said Shaverdian.

Radiology reports and laboratory results, which are now widely available at major centers and health systems via patient portals, were also initially a source of worry to many clinicians, he said.

Radiation Oncologists Take Up the Cause

Radiation oncologists may be especially motivated to be open about their notes, Shaverdian and colleagues comment.

Patients may have "strong baseline misconceptions" about radiotherapy, they say.

Indeed, at the annual meeting of the American Society for Radiation Oncology in 2017, a survey of breast cancer patients revealed that nearly all (94%) of the women were initially fearful of receiving radiation, and half (47%) had heard or read frightening stories of serious side effects from the treatment.

The most common initial fears related to damage to internal organs (40%), skin burning (24%), and becoming radioactive (7%).

Oncologists and other physicians also have fears — about open access to medical records.

Shaverdian said there is a worry that OpenNotes will "alter what and how physicians write in the notes."

But that is a red herring, he said. "At the end of the day, these notes are always accessible because medical records are always accessible to patients who request them."

Shaverdian said that patient privacy is also a concern, owing to potential mistakes or the possibility of records being hacked. Additionally, some people fear that patients will be offended or embarrassed by physician comments. "We didn't find that to be the case in our study," he said.

"In cancer, there is a lot of attention given to advances in treatment, imaging, and drugs," he commented. But this is "an advancement in how we can engage with patients. This can also be a benefit," he added.

The study was supported by an American Medical Association Foundation grant awarded to Dr Shaverdian. The authors and Dr LeBlanc have disclosed no relevant financial relationships.

Pract Radiat Oncology. Published online October 17, 2018. Abstract

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