While empowering patients, oncology open notes may add to physician workload
Beyond its principal mission of saving lives and avoiding harm, a major priority of modern medicine is to promote patient autonomy and engagement.
In recent years, a focus on patient empowerment has led to a push for greater transparency between patients and their providers.
To that end, a provision added to the 21st Century Cures Act, passed by Congress in 2016, allows patients access to all information in their electronic health records without delay. The information available to patients under the Interoperability and Information Blocking Rule includes physician notes about the patient encounter, providing so-called “open notes.”
Although many institutions have offered open notes for years, the federal rule did not take effect until April.
“Even before open notes, patients could go through the medical records department and access their records, but this makes the access open,” Narek Shaverdian, MD, radiation oncologist at Memorial Sloan Kettering Cancer Center, told HemOnc Today. “So, now the patient doesn’t need to make a request; they don’t have to wait. It facilitates the transfer of information so that there’s no longer a wall between the patient and their records.”
However, some oncologists worry that open access to their notes has the potential to engender confusion and fear among patients. Because patients and clinicians will be able to access patient notes simultaneously, a patient may learn of an alarming diagnosis or test result before their provider has the chance to discuss it with them.
“For example, if a patient had a breast biopsy and it came back as cancer, the patient will be able to read that result before even being told by their physician,” Beverly Moy, MD, MPH, clinical director of the breast oncology program at Massachusetts General Hospital, associate professor of medicine at Harvard University Medical School, and a HemOnc Today Editorial Board Member, said in an interview. “The physician may not have been able to access that data immediately during a busy workday. You can imagine the distress that patient would feel. [The 21st Century Cures Act] was passed for a good reason, but this problematic issue may be an unintended consequence.”
HemOnc Today spoke with oncologists and open-notes researchers about patients’ perceptions of and experiences with having access to their notes, complex questions that arise when considering whether minors should have such access, and the impact open notes may have on clinicians in everyday clinical practice.
Improved patient understanding
The Interoperability and Information Blocking Rule requires that patients have access to consultation notes, laboratory report narratives, discharge and summary notes, pathology report narratives, history and physical notes, procedure notes, imaging narratives and progress notes. Psychotherapy notes — as well as information gleaned for use in civil, criminal or administrative actions — are exempt.
“Already, 55 million patients in the U.S. are offered access to their clinical notes, including all the veterans who access their care at the VA,” Charlotte Blease, PhD, a Keane OpenNotes Scholar at Beth Israel Medical Center/Harvard Medical School, told HemOnc Today. “So, the new rules are not entirely out of the blue. We already know a lot about the experiences of patients and clinicians with this practice innovation.”
Data show that patients are interested in having access to their notes and may benefit from them.
Shaverdian and colleagues surveyed 220 patients (61% aged older than 60 years; 51% men) undergoing radiation therapy at University of California, Los Angeles, with whom they provided educational materials on accessing oncology notes, to determine their baseline interest in and perceptions of having open access to the notes. A total of 136 patients (62%) completed the baseline survey and 88 (40%) participated in a follow-up survey after treatment completion.
Results of the baseline survey showed most patients believed open access to oncology notes would enhance their understanding of their diagnosis (99%) and treatment side effects (98%), provide reassurance about treatment goals (96%) and improve their communication with family (99%).
After accessing the notes, these numbers remained high: about 96% noted an improvement in their understanding of their diagnosis, 94% reported better understanding of treatment side effects and 96% reported feeling more reassured about their treatment.
“Some patients may prefer to read their notes alone to really absorb what is being communicated,” Blease said. “That is very hard to do when sitting in shock in front of a physician.”
Conversely, 11% of patients who had read their notes reported increased worry, 6% noted increased confusion and 4% reported finding information they subsequently regretted knowing.
“The vast majority of patients want access to their notes,” Shaverdian said. “Yes, there is a subset of patients that has anxiety about what they might find, but far fewer of them expressed concern about the harms after reading their notes.”
Shaverdian also cited a qualitative study conducted in Sweden — where open notes were first implemented in 2012 — in which patients were surveyed extensively about their reasons for or against access to their notes. Rexhepi and colleagues found that patients largely reported that having access to their notes improved their understanding of medical issues and sense of control. Also, having access to test results improved patient well-being and reduced anxiety because patients did not have to wait weeks or months for the results.
Shaverdian recalled a specific example from the survey that summarized the logic around oncology open notes.
“Patients with cancer largely appreciate the chance to access this information,” he said. “I remember one of the patients surveyed said, ‘If we can manage to have all these cancer diseases and to live with it, then we can handle reading about it.’”
Findings from studies of patient experiences with open notes have been encouraging so far, but Shaverdian acknowledged that there be may different outcomes when open notes are implemented in everyday clinical practice.
“The problem with some of our survey studies is that they’re just of select patient populations, so potentially, [now that] it’s open to everyone through the law, some difficulties in certain patient populations may become more apparent,” he said. “But, overall, the studies have found that the concerns physicians anticipated about causing additional patient worry have not become a reality.”
As open notes become more widely implemented, there may be difficult situations that providers should anticipate. For instance, Moy said that despite studies showing low rates of patient worry, there are certain patient populations for whom open notes may cause a good deal of distress.
“One thing that is problematic is that radiologists and pathologists might use language that sounds terrifying, and that information is relayed in the report,” Moy said. “The patient’s physician might then reassure them that it’s nothing to worry about, but by the time they speak to the doctor, the patient has already been worrying.”
This delay between the patient reading their notes and the physician explaining them can cause substantial frustration, Moy said, adding that her institution has had to be resourceful in its scheduling practices to avoid this issue.
“We’ve tried to minimize the amount of time that patients will need to wait between reading the results of a scan or other test,” Moy said. “For example, if a patient has metastatic breast cancer, is on a certain treatment and has gotten CT scans to see if they’re responding to treatment, we try to book an appointment with them the following day, so that we can go over the results right away.”
Blease said patients should be informed about the potential benefits as well as the risks of accessing their notes, noting that some scenarios might be more likely to cause distress.
“For example, it may be that logging on to read test results late at night — when they can’t get hold of a doctor — is inadvisable,” she said.
Additionally, there are circumstances under which physicians might consider it in the patient’s best interest not to read the notes, Blease said.
“In some cases, it might not be appropriate to share notes — for example, if a patient is judged to be at risk for physical self-harm after reading them,” she said. “However, even in these cases, the onus will be on clinicians to justify hiding the notes.”
The use of terminology that could potentially embarrass patients also may prove to be problematic. Terms such as “morbidly obese” may upset patients due to their negative connotations, Moy said.
“That is a medical diagnosis, and there are things like this that we need to deal with for preventive health care, but are we going to offend the patient?” she said. “As physicians, we need to remember we are taking care of the patient and sometimes our notes might contain information that requires explaining to avoid hurt feelings.”
Moy also raised concern about the fact that although some institutions have translation services available for open notes, not all do.
“Health equity is an important issue, and if this is really going to help outcomes, we can’t leave people who don’t speak English out in the cold,” she said.
Access for minors
The ability of children to access their oncology patient notes is a particularly complicated aspect of an already emotionally fraught issue.
Perhaps because it is such a potentially controversial issue, pediatric patient access varies legally from state to state. In all cases, however, patients must at least be adolescents to access their notes.
“When it comes to adolescents, state laws differ about the age at which minors can independently and confidentially access health services,” Blease said, “In Massachusetts, for example, adolescents may access such services at age 13 [years], even while parents/guardians still retain access to the non-confidential parts of the minor’s record until they turn 18.”
Blease said at Boston Children’s Hospital, physicians can now create two sets of notes — one that is visible on the portal and another that is held privately.
In Sweden, the law essentially circumvents the issue of when children should gain access to their notes, Blease said.
“Between the ages of 13 and 16 [years], nobody — that is, neither the adolescent nor the parent/guardian — can access the notes,” she said. “Then, at the age of 16 [years], the adolescent gets full access.”
Experts said providing open notes is especially complicated when it comes to teenagers, who may not want their parents to have access to some of the information in their EHRs, such as notes about sexually transmitted diseases, drug use or sexual history. A teen’s medical records also might contain sensitive information about their parents, potentially revealing that a parent is not biologically related to the teen or has a certain disease.
Despite these potential complications, proponents of open notes for teenagers believe access to this information is developmentally appropriate and reflects the transition into independence that occurs naturally. Also, being engaged with their medical care through open notes may enable teenagers to better become their own advocates as they enter the realm of adult care.
“Adolescence is a period of time when individuals are starting to take on more responsibility and gain more independence, and that includes a greater responsibility over their own health care,” Fabienne Bourgeois, MD, MPH, pediatric hospitalist for inpatient services and associate chief medical information officer at Boston Children’s Hospital and assistant professor of medicine at Harvard Medical School, told HemOnc Today. “Open notes really serve as a tool to help them gain additional understanding and knowledge of their health conditions as they ultimately assume responsibility for their health care.”
Bourgeois said access to patient notes provides context and understanding to patients during a very confusing and often busy time. She said she encourages parents to play an active role in reviewing notes with a teen patient, if the patient is willing.
“We’re huge proponents of not necessarily having these patients go through this alone, but having a parent help them read through the notes,” she said. “It’s a great opportunity for parents to work with teens to help them understand what’s going on.”
Physician interest in open notes is substantial, but studies suggest their enthusiasm is less resounding than that of patients.
According to a web-based survey of 1,631 providers and 23,576 patients published in Cancer Cell, 98% of patients with cancer felt that open access to their notes was a good idea, compared with 70% of physicians.
Additionally, 44% of physicians surveyed felt that patients would be confused by their notes, whereas only 4% of patients reported being confused after reading their notes.
“Patient and clinician views about open notes in oncology are not aligned, with patients expressing considerably more enthusiasm,” the researchers wrote.
There may be various reasons for this discrepancy. In addition to representing a break from traditional medical practice, open notes may put pressure on physicians to reword their notes for their new lay audience.
“A primary purpose of medical records and good documentation is to provide important information for colleagues who may have to cross-cover the patient in case of emergency,” Moy said. “But, if you find you’re having to be conscious that your patient can’t understand your notes, you might dilute them down to a point that could be detrimental in case there is an emergency.”
Perhaps due to this awareness of their “new audience,” providers may take additional time to draft their notes. However, Blease said this is not an insurmountable hurdle, and providers can be taught to adapt.
“Some doctors are swapping unnecessary acronyms for plainer language, but many report documenting clinical information just as they did before opening their notes,” she said. “Greater training on note-writing will be imperative. Clinicians must retain the same level of detail in their notes, but they are no longer writing just for themselves or other clinicians. The new reader — the patient, or their family caregivers — can benefit from clear, accurate and sensitive documentation describing what was discussed in visits.”
However, all these considerations may lead to a lengthier note-taking process for clinicians, on top of extra time needed to address patient concerns from reading their notes.
According to results of a survey of 6,064 clinicians by DesRoches and colleagues, published last year in JAMA Network Open, 74% of clinicians agreed open notes were a good idea, but 37% reported having to spend more time on documentation. Many respondents also said they changed the way they wrote their notes, most frequently by changing language that might be perceived as critical of the patient (58%).
“There is a lot of burden that is being placed on physicians at a time when burnout is already high,” Moy said.
Even when patients are fully informed, their anxieties and fears may lead to excessive phone calls or patient portal messages to their physicians. According to Moy, this is only worsened when a patient learns of a diagnosis or test result before they’ve had the chance to discuss it with their oncologist.
“Open notes has exponentially increased the number of messages and phone calls that come into oncology practices,” she said. “There’s a lot of panic and anxiety, and there’s so much going on now in health care with the administrative burdens and COVID-19 burdens. Adding something else on top of a plate that is already very full is stressful.”
Moy recommended a multifactorial approach that combines physician and patient education.
“Patients need to be educated that these results will be there, and they should be encouraged to look if they feel it will be helpful, but perhaps not to look if they believe that it would make them more anxious,” she said. “I’ve started having those conversations before scans and tests. I say, ‘You can look, but I will also talk to you about it at our visit tomorrow,’” she said.
Physicians also need to be educated in a uniform way about what to include in patient notes and how to phrase these notes, Moy said.
“It requires a wholesale retooling of a practice,” she said. “There needs to be more thought in the medical system about the back end of these results, in terms of anticipating how they will be for patients. I don’t think anyone who wrote this provision in the law anticipated that it would require so much change.”
Still, such change may ultimately improve the provider-patient relationship.
“The whole goal of open notes has been to empower patients and to help patients and physicians have stronger therapeutic relationships,” Shaverdian said. “It’s not just about transparency, it’s about patient empowerment. It’s about making sure that patients are informed and are part of their health care decision-making. All of this has been done in an effort to make things better. It’s not trying to make things more complicated.”
DesRoches CM et al. JAMA Netw Open. 2020; doi:10.1001/jamanetworkopen.2020.1753.
Rexhepi H, et al. Health Informatics J. 2018;doi:10.1177/1460458216658778.
Salmi L, et al. Cancer Cell. 2020;doi:10.1016/j.ccell.2020.09.016.
Shaverdian N, et al. Pract Radiat Oncol. 2018;doi:10.1016/j.prro.2018.10.004.
For more information:
Charlotte Blease, PhD, can be reached at OpenNotes, 133 Brookline Ave., Suite 2200, Boston, MA 02215; email: firstname.lastname@example.org.
Fabienne Bourgeois, MD, MPH, can be reached at Boston Children’s Hospital, Division of General Pediatrics, 300 Longwood Ave., Hunnewell, Ground Floor, Boston, MA 02115; email: email@example.com.
Beverly Moy, MD, MPH, can be reached at Massachusetts General Hospital, 55 Fruit St., Boston, MA 02114; firstname.lastname@example.org.
Narek Shaverdian, MD, can be reached at Memorial Sloan Kettering Cancer Center, 1276 York Ave., New York, NY 10065; email: email@example.com.