Open Notes: Doctors and Patients Signing On FREE

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.

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).

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.

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.

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.