Navigating the healthcare system and its processes can seem overwhelming to patients. If patients understand why their clinician recommended something, know how and when to take medications, and why they shouldn’t skip a dose—or 10—they may not feel so out of control. Sharing examination notes with patients can be helpful to many patients who struggle with adherence to medication and follow-up steps, such as diagnostic screening and lab tests.
Open access to provider notes may also improve patient engagement and satisfaction, which can build stronger care partnerships between patients and providers. This can improve communication and create a collaborative decision-making process, motivating patients to be more engaged and compliant with their care plans and leading to better outcomes.
With that in mind, the ACR Practice Management staff would like to make sure our members didn’t miss the following story, originally posted Jan. 17, 2020.
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Open Your Notes
Studies have shown that easy sharing of clinician encounter notes with patients potentially increases trust and medication adherence, with minimal drawbacks for medical providers.1-3 Although some clinicians have initial reservations, many of their concerns are allayed with experience. With new legislation and regulations, clinicians can expect that more patients will choose to access their medical notes. Here we discuss the movement toward more transparent sharing of medical notes with patients.
Background: Patient Visit Notes
The medical notes that clinicians write after patient encounters form a key part of the medical record, allowing clinicians to track medical progress and share information with colleagues. Traditionally, most clinicians did not consider patients’ potential responses to such notes, as they were not usually read by patients.
Laboratory or imaging results represent objective findings, but medical notes include a clinician’s personal views. David Blumenthal, MD, a former primary care physician and current president of The Commonwealth Fund, a philanthropic organization engaging in research on health policy issues, says, “The written products of physicians are more sensitive than the other data, because they are more subjective, and they involve words. Words are both wonderful in their descriptive power and imprecise sometimes. It’s this background of sensitivity that makes notes being public more anxiety provoking for some clinicians.”
Open Notes Initiative
Dr. Blumenthal
But some people believe patients deserve better access to their patient notes as a matter of principle. Motivated by a belief in the value of patient-centered medicine, the OpenNotes pilot project began in 2010, funded by the Robert Wood Johnson Foundation. At that time, some electronic patient portals offered patients the ability to view certain parts of the medical record online, such as test results, but clinician notes were rarely visible.1
During the pilot project, patients were able to view the notes through the existing patient portals at the participating sites. The pilot project ran for a year in primary care practices at three sites: Beth Israel Deaconess Medical Center, Boston; Geisinger Health System, Pennsylvania; and Harborview Medical Center, Seattle. More than 100 primary care physicians and 13,564 patients were included in this initial study.1
Catherine M. DesRoches, DrPH, an associate professor of medicine at Harvard and executive director of the OpenNotes project, recalls, “When we did the pilot, this idea that you would show patients the clinical notes was at the fringe of medicine, so the clinicians were really worried.” However, the project was deemed successful, with patients reporting benefits and requesting the process be continued. For clinicians, the program seemed to disrupt their work lives only minimally. After the pilot, when clinicians had the opportunity to turn off OpenNotes, none of them did.1
Since then, other institutions have adopted the policy. Follow-up studies have continued to demonstrate the potential benefits of the practice in better patient understanding, trust and compliance.2-4 As Dr. DesRoches notes, “What most places find is that when they turn on note sharing, despite the many worries of their clinicians, there are very few problems.” Currently, over 38 million patients have a portal account with an organization that shares notes to the portal.2
Arturo Diaz, MD, an instructor of medicine at Harvard Medical School, Boston, and a practicing rheumatologist at Beth Israel Deaconess Medical Center says, “Most patients who access their medical records find the information useful to keep track of their labs and other testing. It helps them to understand the status of their disease, and they use the information wisely in interactions with other physicians.”
Adds Dr. DesRoches, “Patients really want this. It has more benefits in terms of how it can help patients engage than it has drawbacks.”
Clinician Concerns
For clinicians, the prospect of patients reading their medical notes can bring up concerns. One is that patients may be confused or offended by something they read in their notes.
Dr. Blumenthal points out that clinicians may reconsider certain language choices because of this. He says, “Some people use the word ‘obese’ with scientific precision referring to BMI [body mass index], and some people use it much less precisely as a term. But patients may react very differently to words such as obese or overweight.” Similar issues of sensitivity apply to the way one might document aspects of mental and behavioral health.
Dr. DesRoches
Dr. Diaz says writing the notes can be more challenging with increased transparency, such as in a patient with multiple psychosomatic symptoms without organic disease, or in a malingering patient. “In such a case,” he says, “it is not possible to make a clear statement of my impression, which is veiled by discussing the discrepancy between symptoms and lack of physical findings or testing to support them.”
Dr. Diaz also says that prior to initiation of OpenNotes at his institution, he was concerned some patients might not like the information contained in the note, such as a mention of drug use, and that this has sometimes happened. He says sometimes patients have misunderstood note content because it is not written in lay language, and they have become upset.
However, this seems to be relatively uncommon. A recent study in the Journal of Medical Internet Research looked at about 23,000 patient survey responses from the original three OpenNotes sites, which included a wide range of primary care and medical and surgical specialties. About 3% of patients reported being very confused after reading a note, and about 5% of patients said they had been more worried after reading a note.2
Another major clinician concern is that more transparent note access will increase their workload. The data thus far show, on the whole, this seems not to be the case. Dr. DesRoches describes an analysis performed by Virginia Commonwealth University of its implementation. “What they found is that for every patient who called because they found something in the note that they were worried about or was a mistake or they had a question, there was a least one patient who didn’t call because they read the note and it answered the question.”
Studies have shown some clinicians do report spending more time on note writing than they did previously. Another analysis of the OpenNotes projects found 11% of clinicians spent more time editing or writing notes.3 It’s probable that the prospect of having notes more frequently accessed by patients impacts certain clinicians more than others. As Dr. Blumenthal explains, “Clinicians vary a lot in their attitudes and their practices in their note taking. They’ve been taught by different mentors about what’s normal to put in a note and what’s not.” Clinicians who were initially taking poorer notes may find that increased medical note access motivates them to make more thorough observations, which might take time.
Some clinicians are also concerned many patients will ask them to make extensive edits to their notes. Paul A. Monach, MD, PhD, a rheumatologist at Brigham and Women’s Hospital and the VA Boston Healthcare System, says in his limited experience, very few patients request such edits. He says if a patient asked him to do that, he would do it once but would inform the patient it is a time-consuming practice he and other doctors do not appreciate being asked to do. He also says having the patient write an additional note themselves would be a better option. “I would ask them to put their perspective in writing and copy it into the record, because it just takes a minute and is a completely honest approach.”
Potential Benefits
Dr. Monach
Dr. DesRoches describes one important potential benefit to note sharing: the reduction of errors in the medical record. “About a quarter of patients said they found a serious mistake. If your organization prevents one mistake like that per year that doesn’t spiral into a serious clinical problem, that’s a big win.”
Improved patient understanding is another potential benefit. Although some clinicians worry that reading notes will confuse patients, evidence suggests that reading notes may increase patients’ understanding, allowing them to more fully participate in their healthcare. Even though not all patients will be able to understand all of the clinical terms used in an official clinic note, the very fact of their existence may allow patients to better engage with their healthcare providers.
Previous research has demonstrated the amount of information patients remember from clinical encounters is remarkably small, with 40% or more of information being forgotten almost immediately. That percentage may increase when a patient is stressed. Much of what patients think they remember contains incorrect information.5 But written notes may help provide a bridge to understanding and, secondarily, to improved medical adherence.
“There’s a cognitive burden that happens with patients in the office. Maybe the clinician is using language they don’t quite understand, or maybe they are anxious,” says Dr. DesRoches. This can make it very difficult for patients to remember everything they should. “Notes, in the best sense, are the narrative of what happens in the visit. By giving that to patients, we remind them of what was talked about during the visit and any follow-up steps needed,” she adds.
This improved understanding may translate to better medical adherence. A recent analysis in Annals of Internal Medicine surveyed about 30,000 members of the expanded OpenNotes pilot study about how participation in the program had affected their adherence. Of the patients who had been taking medications in the year prior, 14% reported they were more likely to take their medication as prescribed because they had read their visit notes. This response seemed particularly important for traditionally underserved populations, such as those who spoke English as a second language or had a lower level of formal education.4
Dr. DesRoches admits the survey response was not what they had hoped, so it’s possible the patients who responded were on average more enthusiastic about the option. The study’s self-reported nature, via survey, imposes inherent limits in its ability to draw conclusions.4
However, Dr. DesRoches explains, “Given that we know how much non-adherence costs, both in terms of dollars but also in terms of poorer health outcomes, even if that 14% is a three- or fourfold exaggeration of what the true effect is, that’s still pretty significant.”
In the OpenNotes study in the Journal of Medical Internet Research, 73% of patients responded that note reading was very important to helping take care of their health, with 70% responding it helped them feel in control of their care, and 66% saying it helped them remember their plan of care. Over 98% said such electronic access to visit notes was a good idea, and 62% said it was very important in choosing a future provider.2
Dr. Blumenthal believes these empirical studies have been useful, demonstrating that open notes aren’t dangerous for patients. But he believes they are unlikely to completely reassure clinicians. “Every specialty will want to see that their diagnoses and their language and their traditions and cultures with respect to recording information will be acceptable to patients and not interfere with their lives and not make clinicians’ lives harder.”
Dr. DesRoches explains that although clinicians may want to see data on adherence and patient outcomes from randomized, controlled trials, her group has not pursued them. That’s because such trials are expensive and complicated and because open notes aren’t expensive to implement and have shown so few adverse effects. “The environment at the federal level is changing so quickly that it would be very difficult to design a study that could get to those clinical outcomes that clinicians say they are looking for,” she adds.
Current Requirements for Note Sharing
Dr. Blumenthal agrees the move toward note transparency is now inevitable. “While we are having this conversation about how doctors’ lives might be affected by how patients perceive this information and may react, the world of data availability and of patients’ rights has been proceeding on another track,” he says. “That other track says that patients have the right to see medical data about themselves, and that it’s not a speculative right, but is a right that is enshrined in law.”
Passed into law in 1996, the Health Insurance Portability and Accountability Act (HIPAA) dictated that every patient who requests it has the right to view their medical notes within 90 days.6 At the time, it was not specified how that record should be made available. Dr. Blumenthal explains, “It used to be mainly made available via Xerox copies. There are all kinds of stories about stonewalling, about the charges that were associated with it and the time it took. But that’s the law.”
Dr. Monach agrees that making these records more easily accessible is the right thing to do. He says, “From a practical point of view, patients have a legal right to see their notes under HIPAA. My view is that we might as well give them access as soon as possible and free of charge. It may also help them convey information to a doctor who isn’t in the same practice as I am.”
New legislation is pushing the movement toward transparency even further. Enacted in December 2016, the 21st Century Cures Act now grants patients the right to access their notes via electronic transmission if they request it. Proposed regulations of the act have been put forward by the Office of the National Coordinator for Health Information Technology and the Centers for Medicare & Medicaid Services.7
Dr. Blumenthal explains, “If these are adopted, patients will be able to authorize a third party to get the records for them. Think startups, Apple, Google, IBM, Samsung, Facebook, Amazon. Apple already has agreements with hundreds of hospitals to enable them to download patients’ complete electronic health records, including physician notes.” Dr. Blumenthal thinks it will take some time before such electronically accessed notes become widely available.
Different Ways to Implement
Although the move toward medical transparency is well underway, institutions have choices as to how actively and swiftly they will integrate these practices. “Organizations have a lot of control about how they do this. They can start a department at a time. They can publicize it to patients, or they can roll it out and choose not to while the clinicians get used to the idea,” notes Dr. DesRoches.
Institutions already using open notes display variability in the percentage of patients who choose to access them. Dr. DesRoches says she would like to see further research exploring how we might get a higher percentage of patients to use such notes, as well as their other health data. Getting patients to sign up for the portal can be a challenge. Dr. Diaz also highlights that not all patients will be able to derive benefits, as patients with limited education, resources or computer literacy may not be able to access their information.
Dr. DesRoches also says it would be helpful if we could make these existing portals easier for patients to use, with easy interface with mobile formats. It might also be possible to design platforms that link to patient education information, so patients might more easily understand their medical record.3
Clinicians also vary in their initiative to prompt patients to sign up for portal access. Dr. Diaz says, “I ask every new patient to register on PatientSite to have access to their chart.” About a third of patients using OpenNotes report that their clinician had encouraged them to access them.2
Whether or not they encourage patients to access these notes, clinicians will have to learn to live with the fact that more of their patients are likely to start accessing them via electronic portals. “Knowing that patients can see our notes does more good than harm,” says Dr. Monach. “Personally, I think it’s best to make everybody own what they say.”
Ruth Jessen Hickman, MD, is a graduate of the Indiana University School of Medicine. She is a freelance medical and science writer living in Bloomington, Ind.
References
- Delbanco T, Walker J, Bell SK, et al. Inviting patients to read their doctors’ notes: A quasi-experimental study and a look ahead. Ann Intern Med. 2012 Oct 2;157(7):461–470. [Published correction appears in Ann Intern Med. 2015 Apr 7;162(7):532.]
- Walker J, Leveille S, Bell S, et al. OpenNotes after 7 years: Patient experiences with ongoing access to their clinicians’ outpatient visit notes. J Med Internet Res. 2019 May 6;21(5):e13876.
- Walker J, Meltsner M, Delbanco T. US experience with doctors and patients sharing clinical notes. BMJ. 2015 Feb 10;350:g7785.
- DesRoches CM, Bell SK, Dong Z, et al. Patients managing medications and reading their visit notes: A survey of OpenNotes participants. Ann Intern Med. 2019 Jul 2:171(1):69–71.
- Kessels RP. Patients’ memory for medical information. J R Soc Med. 2003 May;96(5):219–222.
- Individuals’ Right under HIPAA to Access Their Health Information. U.S. Department of Health and Human Services. Reviewed February 25, 2016. Accessed July 8, 2019.
- Blumenthal D, Abrams MK. Ready or not, we live in an age of health information transparency. Ann Intern Med. 2019 Jul 2:171(1)64–65.
