Despite growing interest in engaging patients and families (P/F) in patient safety education, little is known about how P/F can best contribute. We assessed the feasibility and acceptability of a patient–teacher medical error disclosure and prevention training model. We developed an educational intervention bringing together interprofessional clinicians with P/F from hospital advisory councils to discuss error disclosure and prevention. Patient focus groups and orientation sessions informed curriculum and assessment design. A pre-post survey with qualitative and quantitative questions was used to assess P/F and clinician experiences and attitudes about collaborative safety education including participant hopes, fears, perceived value of learning experience and challenges. Responses to open-ended questions were coded according to principles of content analysis.
Millions of patients are accessing their medical records online via secure electronic patient portals. They are also increasingly uploading data directly into their records, and many clinicians now offer patients ready and ongoing access to the notes that document encounters. In response, patients report improved understanding of their care, better recall, enhanced adherence to care plans, and an increased sense of control over their health.
Patient advocates and safety experts encourage adoption of transparent health records, but sceptics worry that shared notes may offend patients, erode trust or promote defensive medicine. As electronic health records disseminate, such disparate views fuel policy debates about risks and benefits of sharing visit notes with patients through portals.
Patient and family engagement is gaining attention as a priority in patient care1 and medical education.2 OpenNotes, an innovation that invites patients to read their visit notes through a secure online portal, has demonstrated several health benefits.3 Over five million U.S. patients have online access to their notes today; shared visit notes may not only engage patients in care but also open the door to new educational innovations.
Intrigued by the idea of patient/family feedback on visit notes, our research team asked residents and their supervisors whether such feedback would be helpful.4 In surveys and focus groups, many agreed it would be.
As soon as the elevator door closed, the tears gave way, and I walked home with my head down … thoughts of my mistakes running rampant.
So began the reflection of a third-year medical student, who described falling short of his residents’ expectations on a history and physical examination. The crucial flaw? He had taken too long. His reflection continued:
[The next day], an elderly patient, traction stockings covering her small, dark brown legs, shuffled toward me. She stopped directly in front of me, her delicate, slightly stooped frame supported by her thin hand, grasping the IV pole. “Young man,” she said, “I heard you speaking to the patient in the bed next to me [last night]. And I just wanted you to know that I’m just so proud of you.… How you spoke to that patient with such care and intelligence. I’m just so proud.”
In its landmark report Crossing the Quality Chasm, the Institute of Medicine (IOM) identified six aims for shaping the future of health care.1 The report argued that care should be safe, effective, patient-centered, timely, efficient, and equitable. Some of these aims necessitate trade-offs with each other. For example, prioritizing effectiveness may constrain efficiency, or efficiency may compromise timeliness. Although there is no inherent conflict between effective care and patient-centered care, clinical practice guidelines and quality metrics often emphasize effectiveness over patient-centered care. In this article, in lieu of “patient-centered care,” which the IOM defined as “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions,”1(p. 6) we use the term personalized care.
Patient access to online electronic medical records (EMRs) is increasing and may offer benefits to patients. However, the inherent complexity of medicine may cause confusion. We elucidate characteristics and health behaviors of patients who report confusion after reading their doctors’ notes online. We analyzed data from 4,528 patients in Boston, MA, central Pennsylvania, and Seattle, WA, who were granted online access to their primary care doctors’ clinic notes and who viewed at least one note during the 1-year intervention. Three percent of patients reported confusion after reading their visit notes.
Availability of notes following PCP visits was associated with improved adherence by patients prescribed antihypertensive, but not antihyperlipidemic, medications. As the use of fully transparent records spreads, patients invited to read their clinicians’ notes may modify their behaviors in clinically valuable ways.
Patients living with HIV/AIDS face large societal and medical challenges. Inviting patients to read their doctors’ visit notes via secure electronic portals may empower patients and improve health. We investigated whether utilization and perceptions about access to doctors’ notes differed among doctors and patients in an HIV/AIDS clinic versus primary care setting. We analyzed pre- and 1-year postintervention data from 99 doctors and 3819 patients. HIV clinic patients did not report differences in perceived risks and benefits compared to primary care clinic patients, however, they were more likely to share notes with friends (33% versus 9%, P = .002), other health professionals (24% versus 8%, P = .03), or another doctor (38% versus 9%, P < .0001). HIV clinic doctors were less likely than primary care doctors to change the level of candor in visit notes (P < .04). Our findings suggest that HIV clinic patients and doctors are ready to share visit notes online.
We congratulate Martin on his thoughtful description of how he has opened clinical notes to his patients. We write in response from two perspectives. One of us (D.deB.) is a patient who has become active in the world of patient engagement, a switch in careers triggered by widely metastatic renal carcinoma, now in remission for several years thanks to superb care by physicians and nurses in primary care and oncology. The second author (J.W.) is one of the leaders of the OpenNotes initiative and a health services researcher, with a background in nursing. We touch first on several points that draw on a growing national experience with fully transparent medical records and then offer the perspective of a patient and consumer advocate.