Perspectives20 July 2010

Open Notes: Doctors and Patients Signing On

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    Abstract

    Reader Survey: What do you think about open access progress notes?

    Few patients read their doctors' notes, despite having the legal right to do so. As information technology makes medical records more accessible and society calls for greater transparency, patients' interest in reading their doctors' notes may increase. Inviting patients to review these notes could improve understanding of their health, foster productive communication, stimulate shared decision making, and ultimately lead to better outcomes. Yet, easy access to doctors' notes could have negative consequences, such as confusing or worrying patients and complicating rather than improving patient–doctor communication. To gain evidence about the feasibility, benefits, and harms of providing patients ready access to electronic doctors' notes, a team of physicians and nurses have embarked on a demonstration and evaluation of a project called OpenNotes. The authors describe the intervention and share what they learned from conversations with doctors and patients during the planning stages. The team anticipates that “open notes” will spread and suggests that over time, if drafted collaboratively and signed by both doctors and patients, they might evolve to become contracts for care.

    … if there's any correction that needs to be done or miscommunication, it can get straightened out right away. So, I don't think it's going to be a waste of time to the physician or will take a lot of the physician's time. Matter of fact, I think [allowing patients to read their doctors' notes] is going to make things a lot better in the long run.

    —A middle-aged engineer

    As information technology transforms care, it might be time for doctors to share the hidden core of health records—the doctor's note. As the public demands better care and greater transparency, should patients review and, at times, join their doctors in composing their health records?

    In preparation for the summer 2010 launch of “OpenNotes,” a demonstration and evaluation project in Massachusetts, Pennsylvania, and Washington, in which more than 100 primary care physicians (PCPs) are inviting their patients to read their visit notes through secure electronic patient portals, we consider lessons from the past, review current practices, and speculate about the future. Opening documents that are often both highly personal and highly technical is anything but simple; the implications are broad and filled with uncertainty.

    Evolving Form and Function of the Note

    Doctors have long recorded patient encounters by generating records ranging from cryptic abbreviations on an index card to lyrical essays. Some follow Lawrence Weed's exacting precepts for a problem-oriented medical record (1), and since the 1920s, few graduates of Columbia University College of Physicians and Surgeons forget the “Atchley History,” which commands that each patient leap off the page, instantly recognizable to anyone who reads the note (2). As options for producing notes expand, contents vary ever more widely, and typing or dictating a note destined for an electronic medical record has become increasingly common, with the patient sometimes watching or listening in.

    Visit notes serve many functions. They remind doctors of their patients' unique characteristics and medical histories, outline musings about differential diagnoses and therapeutic strategies, and inform others who participate in the patient's care (3). Today, beyond clinical care, the visit note must also serve the needs of administrators, quality monitors, and payers. Electronic documentation may help clinicians address these nonclinical needs, but as boxes in templates are checked, entries from past notes are pasted in, diagnoses are codified, data are entered automatically, and medicines are reconciled, the unique attributes of the patient often disappear in an effort to justify a level-4 bill (4). Doctors' notes can also stifle or fuel the fires of litigators; provide valuable records for scientists or historians; and at times, serve those spying on ill celebrities or pursuing other nefarious objectives (Figure).

    Figure. Access to doctors' notes.

    QA = quality assurance.

    In the early 1970s, researchers and consumer advocates suggested that patients review their medical records (5), and experiments began to examine the effect of inviting patients to join doctors in coproducing visit notes (6). Concomitantly, consumer advocates and federal allies called for a patient bill of rights, and states passed statutes entitling patients to review their records. In 1996, the federal Health Insurance Portability and Accountability Act (HIPAA) mandated patients' rights to review their records and request amendments (7). Soon thereafter, the Institute of Medicine urged society to view the note not as an artifact, but as a living, interactive document shared between patients and providers (8). Yet, despite exhortation and statutes, the norm has not evolved. Patient review remains the rare exception, and roadblocks abound. Many clinical institutions charge for copies, authorize patient review only when a clinician is present, and take their time responding to patient requests for records.

    Today, more and more patients embrace secure Internet portals that may enable them to exchange secure electronic messages with providers; display test results, medications, problem lists, and health summaries from the electronic medical record; and facilitate prescription refills and appointment scheduling (9–19). Such portals can also help patients review electronic clinic notes outside the office setting. This project is designed to gain evidence about the feasibility, benefits, and harms associated with such access.

    OpenNotes: Demonstration and Evaluation

    The OpenNotes demonstration and evaluation project is evaluating the expectations and subsequent experiences of both patients and their PCPs. We chose an observational design because it would not be feasible to blind participants or to obtain consent from large numbers of patients for a randomized trial, and we could involve far more patients and providers in an observational study than we could enroll in a trial. Our quasi-experimental study was developed with both a pre–post design and comparison groups of nonparticipating PCPs and patients. In addition to surveying patients and doctors before and after the study, we are asking those who participate to offer anecdotes and are examining several aspects of portal use and health care utilization before and after implementation.

    More than 100 PCPs have volunteered for the project, and about 25 000 patients who are registered portal users will be able to access their visit notes online for 12 months. Through their institutions' secure Web sites, the physicians are inviting patients by e-mail to view their PCPs' signed notes after a visit and again before a subsequent visit. The settings are diverse: Beth Israel Deaconess Medical Center is an urban academic health center with community practices in and around Boston; Geisinger Health System is an integrated health system in rural Pennsylvania; and Harborview Medical Center is a county hospital that serves many indigent patients in Seattle. Beth Israel Deaconess Medical Center and Geisinger Health System both have secure, established portals used by tens of thousands of patients. In the OpenNotes project, Harborview Medical Center is for the first time offering its patients access to a secure portal.

    The bottom-line evaluation of OpenNotes, to be assessed primarily through Web-based surveys, is straightforward: Will patients and providers want to continue online access to notes when the year-long study ends? To understand in some detail what might contribute to those judgments, we went to the literature and to potential study participants—both PCPs and patients—to develop secondary hypotheses.

    Descriptive studies and trials of patient-accessible medical records have begun to evaluate the effect of patient access to notes, but most allow patients to review paper medical records only in a clinical setting. Overall, the literature suggests that patient access to the medical record may improve patient–doctor communication, empower and educate patients, and foster adherence. Risks seem minimal, and few patients find their records confusing or anxiety-provoking, in part perhaps reflecting self-selection. Patients generally report few concerns about documenting sensitive issues (for example, sexuality, marital problems, and drug use), and providers report that patients may correct some serious inaccuracies. Physician concerns about effects on documentation, their own time, and staff time are common, but in practice, no substantial effects have been demonstrated (20–23).

    The PCPs with whom we spoke seemed to worry first and foremost about the effect on their time, that is, they anticipated calls, letters, and e-mails as patients seek clarification; disagree with statements; or correct what the doctors consider trivial errors of fact. Some felt they would have to compose scientifically imprecise notes that leave out important diagnostic and therapeutic considerations. Some were embarrassed by how they write. They talked about halting phrases as they hunt and peck on their keyboards, feared that the many typos that creep into notes will seem unprofessional, or were self-conscious about the impersonal appearance of notes generated by templates. Wondering how often phrases like “the patient denies … ” or “the patient appears SOB [short of breath]” would evoke an angry response, some doctors anticipated spending considerable time editing notes. Several worried that apparent discrepancies between what they write and what actually happened in the encounter may jump out at the patient, whether real or simply reflecting imprecise patient recall. Remembering that Hippocrates declared, “The chief virtue that language can have is clearness, and nothing detracts from it so much as the use of unfamiliar words … ” (24), one PCP wondered whether doctors' notes can ever be sufficiently clear to patients.

    Our doctors worried further about inappropriate reactions to what patients read. They feared that some might become “cardiac cripples” after reading descriptions of inconsequential arrhythmias, others might be devastated by an observation about mental illness, or speculations about cancer might trigger panic. Others mentioned engendering fear, frustration, guilt, anger, depression, confusion, or hopelessness if their patients read their notes.

    On the other hand, some anticipated both clinical benefits and efficiencies from incorporating laboratory findings and recommendations into the note, thereby obviating the need for a follow-up letter. Many speculated that their notes would remind patients of what occurred during the visit. Patient (and family) review after the visit itself may answer questions; clarify the doctor's diagnostic, behavioral, and educational insights and strategies; help patients digest recommendations and engage in active self-care; and dispel worries about what is not communicated in the visit. In particular, for the patient with chronic illness, some believed that sharing notes may help involve family members and other caregivers more effectively in the patient's care.

    Patients also voiced pros and cons. Some clearly did not want to read what their doctors wrote because they were worried about discovering something they would rather not know, finding potential diagnoses that might make them anxious, or reading what their doctors really thought of them. Others feared reading something that would shake their trust in their doctors. Some felt that unfamiliar medical terminology would make them misinterpret what they read. They wondered how to learn to ask the right questions and who should teach them. More than a few noted that their doctors are already stretched to the limit, and if they were required to write notes that patients can read and understand, time for examination and consultation could diminish. Some also worried that ready access would compromise privacy if electronic information ended up in the wrong hands.

    However, our patients also anticipated benefits. As more patients e-mail their doctors and use other online services, some saw open communication through electronic notes as a logical next step. Others thought that reviewing, and ultimately contributing to, visit notes could help them get on the same page as their doctors. Many expected to search for explanations of technical language on the Internet. Some believed their doctor's notes would prove educational simply by reminding them of what happened during the visit. They expected some notes to reassure them and to calm their fears; other notes might be “truth tellers” and push them to face the reality of a health issue, such as obesity and mental illness, and perhaps break down defenses. Many liked the idea of sharing notes with family, friends, partners, and informal consultants, anticipating that this would help build a personal care system at home.

    The Table summarizes what we read and heard. Among the hypotheses we will test are that PCPs overall will report improved patient–doctor communication, improved patient satisfaction, and no increase in workload. Patients overall will report better understanding of their care and improved satisfaction with their doctors, will not have heightened anxiety or confusion about their health and care, and will demonstrate no change in how often they contact their health care team. Although we developed this intervention with the hope of finding largely positive experiences among PCPs and their patients, we will test for bidirectional effects.

    Table. Potential Advantages and Disadvantages of Open Notes

    Table.
    Looking Ahead

    Open notes pose many questions and probably represent the Model-T stage of the future. Can a single note serve many different audiences, and can the push toward structure and templates preserve the unique attributes of each person? Moving well beyond primary care, will open notes spread to patient interactions with subspecialists, to inpatient hospital care, rehabilitation, or long-term care? Does the doctor need to do all the work in documenting the visit, or could the patient join in, perhaps increasing accuracy and saving the doctor time by preparing the first draft of the history, leaving the doctor to edit, amplify, and interpret? Should patient-generated history, commentary, or rejoinder become part of the record? Might the doctor and patient sign jointly, indicating their agreement on a note's contents? Could such a negotiated note become an annual quality-of-care contract with measurable metrics, such as who lived up to what (25)? Should notes be peer-reviewed for quality, perhaps by both doctors and patients? Should payers be privy to intimate discussion between the doctor and patient? Will privacy disappear, trumped by transparency, or will techniques that maintain confidentiality apply effective brakes? What should patients hold that is theirs alone? What about doctors? Dying of prostate cancer, Broyard (26) challenged doctors to take some risks: “A doctor's job would be so much more interesting and satisfying if he simply let himself plunge into the patient, if he could lose his own fear of falling.”

    At home, patients of the future may review an unedited, automated, 2-camera shoot of a recent electronic or in-person visit to the doctor, and then discuss with family, friends, and the clinician how to modulate and finalize the note. Further ahead, such jointly generated and held records may evolve into a person's story over time, documenting health and illness from early days to the end of life. We expect that is where we are heading, but on a course filled with fits, starts, and unforeseen consequences. As the patient–doctor relationship moves forward, open notes will almost certainly be on the road ahead.

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    Comments

    Roger Miller16 September 2010
    Collaberative Note Creation

    For at least 10 years, my doctor has been using voice-recognition software to create his notes along with his patients during their visits. Since he creates them with me, I read along and can give input immediately, or clarify a question he may ask as he pauses his dictation. Since I have helped create this record I feel no need to ask for visibility to it through other means.

    I have found this to be very beneficial for a variety of reasons, including immediate feedback, reviews of the last visit (which shows up on the screen as we start), and clarity of the translation that occurs from what I say to how it is recorded. He often pauses to ask if I would agree with the statements that were just recorded to the screen.

    From a patient point of view, I highly recommend this practice, and I believe it both reduces the need for note visibility, but also the ease and expense of obtaining copies when needed.

    Conflict of Interest:

    None declared

    Ted Eytan28 July 2010
    Open Notes: Doctors and Patients Signing On

    Our profession began talking about sharing medical records with patients at least 37 (thirty-seven) years ago, when we said, "Concern that sharing information with patients may cause sustained psychological distress is probably unfounded."

    A research study is a good way to change norms, and this group, through the incentive of grant funding, is changing the wiring of several electronic health record systems to try out a new way. That's significant in the path to changing norms. The other significant thing is communicating the results to the community in a respected communication vehicle. <P> I think this work adds to a lot of high impact efforts, including those of people like Regina Holliday , medial mural artist / activist , ( see my blog post about this : http://www.tedeytan.com/2010/07/25/5864 ) that will help physicians and patients learn how to make information transparent and use it to improve health

    Conflict of Interest:

    None declared

    R. Hal Baker26 July 2010
    Nothing to fear but fear itself

    In April 2007, the day the office in which I practice went live on our EHR, we realized that writing out patient instructions no longer made sense. For years, many of us had dictated notes in front of patients. So, at the noon meeting that day, we decided to just give patients a copy of their note at discharge, even though it contained a great deal more information than just instructions. Using voice recognition software, we dictated the assessment, orders, and any instructions before the patient left the room, and often completed the note before the patient arrived at checkout. The sky has not fallen. Patient comments have been uniformly positive. Calls have decreased, rather than risen, while the calls we have received have moved to "my brother in law has diabetes, not my brother," replacing "I forgot how he told me I was supposed to take the stomach pill." Patients have corrected errors in their record that would otherwise have gone uncorrected. Calls of confusion and panic have simply not materialized. In cross coverage of each other, we find each other's notes more understandable, perhaps because they were dictated with the lay patient reader in mind. In writing to patients, we write notes that are worth reading. I am glad to see this come under formal study, but my office already knows what the answer will be.

    Conflict of Interest:

    None declared

    David A. Nardone22 July 2010
    Open Notes - Collaborative Model of Care --- Problem Lists

    Sharing notes with our patients, as discussed by Delbanco et al, is an important component in implementing the collaborative model of health care. I have taken the liberty of sharing my "problem-list" as part of a summary I provide new patients after reviewing their charts and as part of an after-visit summary at the end of the appointment. To date, I have not received any negative feedback, including the sharing of a patient's mental health problems. The most frequent patient response is to clarify details and to correct any errors. I find this mutually advantageous for the reasons outlined in the article. I am confident the 'Open Note' electronic record initiative will gain wide acceptance.

    Conflict of Interest:

    None.

    iris swanson22 July 2010
    truth

    i think a patient should have access to the results of medical test as soon as possible and that doctors should be open and honest with patients.i received a copy of mri,mra,etc. in mail that should have went to my neurologist and i had no idea what they said,so i guess having access wouldn't matter much.

    Mark A. LaPorta20 July 2010
    Open Notes

    My notes have always described a contract.

    In the past 15 years I often let my patients read what is written -- by me, or for instance the rules of their carrier or an x-ray result -- and sometimes I have them add to it and/or initial it.

    So now we're adding a computer and making it more complicated.

    I'm often amazed at what gets grants.