There are concerns regarding whether patients with mental illness should be provided with access to their electronic medical records. This study compared perceptions of patients with (n = 400) and without (n = 2,134) a mental health diagnosis regarding access to primary care clinic notes through secure online portals. Eligible participants viewed at least 1 clinic note during a 12-month period. Administrative data were used to stratify patients by mental health diagnosis. As we hypothesized, patients with and without mental health diagnoses had similar perceptions about online access to notes.
Patient Experience
A Multi-Stakeholder Consensus-Driven Research Agenda for Better Understanding and Supporting the Emotional Impact of Harmful Events on Patients and Families
Background
The nature and consequences of patient and family emotional harm stemming from preventable medical error, such as losing a loved one or surviving serious medical injury, is poorly understood. Patients and families, clinicians, social scientists, lawyers, and foundation/policy leaders were brought together to establish research priorities for this issue.
Methods
A one-day conference of diverse stakeholder groups to establish a consensus-driven research agenda focused on (1) priorities for research on the short-term and long-term emotional impact of harmful events on patients and families, (2) barriers and enablers to conducting such research, and (3) actionable steps toward better supporting harmed patients and families now.
Tackling Ambulatory Safety Risks Through Patient Engagement: What 10,000 Patients and Families Say About Safety-Related Knowledge, Behaviors, and Attitudes After Reading Visit Notes
Background: Ambulatory safety risks including delayed diagnoses or missed abnormal test results are difficult for clinicians to see, because they often occur in the space between visits. Experts advocate greater patient engagement to improve safety, but strategies are limited. Patient access to clinical notes (“OpenNotes”) may help close the safety gap between visits.
Methods: We surveyed patients and families who logged on to the patient portal and had at least one ambulatory note available in the past 12 months at two academic hospitals during June to September 2016, focusing on patient-reported effects of OpenNotes on safety knowledge, behaviors, and attitudes.
Patients perceptions of their doctors’ notes and after‐visit summaries: A mixed methods study of patients at safety‐net clinics
Patients are increasingly offered electronic access to their doctors’ notes, and many consistently receive paper After-Visit Summaries. Specific feedback from patients about notes and summaries are lacking, particularly within safety-net settings.
Will use of patient portals help to educate and communicate with patients with diabetes?
Chronic disease management can require daily attention, and increased levels of patient activation and engagement. We examined whether patients with diabetes perceive a greater benefit to having electronic access to their doctors’ clinic notes compared to patients without diabetes. We hypothesized that easy electronic access to these notes may help patients with self-care by improving education and communication.
What patients value about reading visit notes: a qualitative inquiry of patient experiences with their health information
Background: Patients are increasingly asking for their health data. Yet, little is known about what motivates patients to engage with the electronic health record (EHR). Furthermore, quality-focused mechanisms for patients to comment about their records are lacking.
Objective: We aimed to learn more about patient experiences with reading and providing feedback on their visit notes.
Methods: We developed a patient feedback tool linked to OpenNotes as part of a pilot quality improvement initiative focused on patient engagement. Patients who had appointments with members of 2 primary care teams piloting the program between August 2014-2015 were eligible to participate. We asked patients what they liked about reading notes and about using a feedback tool and analyzed all patient reports submitted during the pilot period. Two researchers coded the qualitative responses (κ=.74).
Inviting patients and care partners to read doctors’ notes: OpenNotes and shared access to electronic medical records
Care partners were more likely to access and use patient portal functionality and reported improved communication with patients’ providers at follow-up. Our findings suggest that offering patients and care partners access to doctors’ notes is acceptable and improves communication and patients’ confidence in managing their care.
Student-accessible healthcare records: A mixed-method study of college student and provider
This mixed methods study evaluated student and provider attitudes and expectations about offering students online access to their student health services visit notes (open notes). Six (N=6) health care providers from four public universities in northeastern Massachusetts participated. Qualitative interviews were completed by students (N=14) from one University in fall of 2013 and an online survey was completed at two universities in Spring of 2014. Attitudes and expectations were explored using qualitative data and descriptive statistics were used to analyze survey questions. Students’ interviews revealed that they desire control over their health and open notes would give them insight and involvement in their health care. Survey data supported these themes. In contrast, providers worried about how it could impact provider-patient relationships. Open notes has the potential to promote students’ understanding and responsibility for their healthcare, which could assist students in their transition from pediatric to adult health care.
Sharing visit notes: Getting patients and physicians on the same page
Shared notes enhance communication and engagement among patients, clinicians, and family members and can be an important facilitator of shared decision making. Patients report valuable clinical benefits, including improved adherence to their medications and treatment plans. Patients want transparency, and those who have experienced shared notes believe the practice should continue. Most providers who share notes want to continue the practice as well and do not report an increase in time spent writing notes.
Your Patient Is Now Reading Your Note: Opportunities, Problems, and Prospects
Patients have unprecedented online access to their medical records. More than 6 million Americans can now read their doctors’ notes via patient portals, and continued rapid growth is likely. Sharing notes with patients may yield important health benefits, including increased patient empowerment and improved medication adherence. Seeing written information, including notes, helps patients remember the plan of care, reinforces patients’ positive behaviors, and strengthens the patient–doctor alliance.
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