Inviting Patients to View and Add to Visit Notes Holds Promise

Diana Phillips

November 15, 2017

Allowing patients and families to coproduce medical notes with clinicians has the potential to increase patient engagement in their care, enhance patient-provider collaboration, and improve the patient and clinician experience, according to the findings of a qualitative study. However, the authors caution that interventions enabling such collaboration must not increase clinician workload or overwhelm patients.

On the basis of interviews with 29 industry experts, including primary care physicians, specialty physicians, nurse practitioners, health information technology professionals, patient advocates, and a policy expert, John N. Mafi, MD, from the University of California, Los Angeles, and colleagues identified major themes related to the experts' perceptions about OurNotes, an electronic health record (EHR) software that allows patients to view and add to their visit notes in their provider's EHR system. The software, an extension of the OpenNotes program, is the result of an initiative developed by the Commonwealth Fund, as reported previously by Medscape Medical News.

Although only two of the interviewees had personal experience with informal versions of OurNotes, most were familiar with and had used OpenNotes, Dr Mafi and colleagues write in an article published November 14 in Annals of Internal Medicine. Of the two who had used OurNotes, one routinely wrote progress notes with patients and the other invited patients to update their previsit history, medications, preventive care, and other information directly into the EHR.

The standardized, semistructured interviews collected participants' general feedback on the OurNotes concept, as well as their thoughts on how such a tool might work before, during, after, and between visits. On the basis of the interview responses, the authors identified five major themes:

  • Potential benefit to patients and families

  • Improved communication and alignment of patient and clinician goals

  • Impact on clinician workload

  • Additional burden to patients and families

  • How the tool might work

"First, participants generally anticipated that patients and families would benefit considerably from contributing to medical notes," the authors write. In addition to the perception that the tool could promote patient engagement and patient-centered care, "[s]ome hypothesized that coproduction of records might offload a substantial portion of busy clinicians' work during an encounter."

The most widely endorsed uses of the tool included asking patients to review previous visit notes before an upcoming visit, to write a semistructured interval history, and to describe goals for the visit, the authors report. "However, many participants viewed interventions during and between visits as unrealistic," Dr Mafi and colleagues write.

As it relates to the workload, participants made it clear that the value of OurNotes would be limited if use of the tool was burdensome to clinicians. "Most participants cautioned against disruptions in workflow from ongoing patient-clinician collaboration on notes, and nearly all viewed any addition to clinicians' workload as insupportable," the authors continue.

Importantly, the experts thought that not all patients would welcome the opportunity to contribute to their EHR. "OurNotes could impose unaccustomed and unwelcome accountabilities on some patients," according to the authors. "Not all patients will want to contribute directly to their records, and those urged to do so may feel intimidated."

Some of the specific suggestions for implementing OurNotes included inviting patients to provide a limited-length interval history before their visit and having the patient data autopopulate the clinician notes for reconciliation; encouraging patients to look for inaccuracies in their record after the visit to reduce errors and improve safety; allowing patients to upload photographs to illustrate illness concerns, such as a rash or other visible sign; using the notes to introduce patient decision aids; and encouraging patients to prioritize their visit agendas.

True patient-centered care has to be a partnership, Dr Mafi said in an interview with Medscape Medical News. "Patients should not feel like spectators to their own care. They should have a voice, and [OurNotes] is another way to let them know that their input is both valuable and essential."

Increased patient engagement facilitated by collaboration on the medical note may lead to safer, higher-quality care. "Research has shown that when patients enter historical data, the quality of the history of present illness and data accuracy improve," he said. "Patient commentary in the note can have enormous benefit in this regard by providing a forum to correct errors and address quality concerns."

Although limited by the study's small size and convenience sample, the findings raise important insights that warrant further study, the authors write, noting that they are beginning pilot interventions in certain settings.

"Before a scheduled visit with a primary care clinician, each practice will invite patients with chronic illnesses to review their records and notes, provide a semistructured interval history, and articulate 3 or 4 goals for the upcoming visit," the authors explain. "We ultimately anticipate that this initiative will lead to an iterative series of experiments in co-production of medical records that will test our overall hypothesis: that co-produced, fully transparent medical records can improve the quality of care and maintain, or even decrease, the cost of care."

In an accompanying editorial, Monika M. Safford, MD, from Weill Cornell Medicine in New York City, discusses the role of communication in the patient-centered care movement and the ways in which allowing patients to contribute to the medical note can enable continued forward progress. 

"The overall goal of [the patient-centered care] movement is to improve communication between physicians and patients, ultimately increasing patients' engagement in care and improving the shared decision-making process, and thereby increasing the proclivity to follow their physicians' advice," Dr Safford writes. She notes that the costs associated with patient nonadherence are "staggering."

Patient coproduction of notes is a novel concept that moves the patient-centered communication agenda in a new direction, Dr Safford states. "That patients have not been allowed to view their health records until recently is perhaps curious," she writes. "Some patients will clearly be more satisfied if they can contribute to the note, and transparency certainly builds trust and a sense of shared ownership."

While the pilot studies will help clarify the effect of OurNotes on the patient and clinician experience of care, "understanding how transparency and co-produced notes could improve quality metrics unrelated to patient satisfaction but more directly tied to costly health outcomes, such as blood pressure control or eye examinations for diabetic patients, is more complicated. Especially unclear is how the authors envision that co-produced notes could lead to lower costs."

These "loftier goals" notwithstanding, "the transparency and bonding that a co-produced note is likely to engender are well worth the exploration," Dr Safford concludes.

This work was supported by a grant from the Commonwealth Fund in New York. Dr Mafi and study coauthor Hannah Chimowitz report grants from the Commonwealth Fund, during the conduct of the study. Study coauthor Melissa Anselmo reports being an employee of and holding stock options with Backpack Health LLC as of July 2017, outside of the period of her contribution to the manuscript. Dr Safford has disclosed no relevant financial relationships.

Ann Intern Med. Published online November 14, 2017. Abstract, Editorial

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