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.
Bell, Sigall
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.
Ethical Challenges Raised by OpenNotes for Pediatric and Adolescent Patients
Sharing clinic notes online with patients and parents may yield many potential benefits to patients and providers alike, but the unprecedented transparency and accessibility to notes afforded by patient portals has also raised a number of unique ethical and legal concerns. As the movement toward transparent notes (OpenNotes) grows, clinicians and health care organizations caring for pediatric and adolescent patients wrestle with how to document confidential and sensitive information, including issues such as reproductive health, misattributed paternity, or provider and parent disagreements. With OpenNotes now reaching >21 000 000 US patients, pediatricians continue to query best portal practices. In this Ethics Rounds, we discuss 3 illustrative cases highlighting common pediatric OpenNotes concerns and provide guidance for organizations and clinicians regarding documentation practices and patient portal policies to promote patient engagement and information transparency while upholding patient and parent confidentiality and the patient- and/or parent-provider relationship.
Disclosure Coaching: An Ask-Tell-Ask Model to Support Clinicians in Disclosure Conversations
Error disclosure is a high-stakes, emotionally charged interaction for patients and families as well as clinicians. A failed disclosure can result in emotional distress, reduced patient and family trust, litigation, and lost opportunities to learn from and prevent subsequent errors. However, many clinicians have little expertise in handling these challenging interactions and can inadvertently make a bad situation worse. Even those clinicians who have had formal disclosure training may have trouble remembering what they were taught when faced with the need to actually discuss an error with patients. Providing just-in-time coaching to clinicians is recommended by national standards. However, there is scant training material to guide error disclosure coaches. Therefore, we developed an “Ask-Tell-Ask” model and materials to guide the disclosure coaching process.
Empowering informal caregivers with health information: OpenNotes as a safety strategy
Patients frequently depend on informal caregivers (e.g., family, friends, or paid workers) to assist with various aspects of medical care, such as medication administration and travel to medical appointments. OpenNotes seeks to share clinicians’ notes with patients through patient portals. Although patients frequently grant portal access to caregivers, the impact of this improved access to health information on the safety of care provided by caregivers remains unknown. Researchers sent a survey to 24,722 patients participating in OpenNotes who had at least one available visit note during the study period. The surveys were sent through the patient portal. Out of the 7058 surveys returned, 150 respondents self-identified as caregivers. Analysis of survey data revealed that access to patient notes enhanced caregiver understanding of recommended medical care including tests and referrals, reminded them about necessary testing, helped them understand results, reminded them about appointments, and improved caregiver ability to assist patients with medications. An Annual Perspective discussed the potential of health information technology to improve patient and caregiver engagement in safety.
Long-term Impacts Faced by Patients and Families after Harmful Healthcare Events
Background
Patients and families report experiencing a multitude of harms from medical errors resulting in physical, emotional, and financial hardships. Little is known about the duration and nature of these harms and the type of support needed to promote patient and family healing after such events. We sought to describe the long-term impacts (LTIs) reported by patients and family members who experienced harmful medical events 5 or more years ago.
Methods
We performed a content analysis on 32 interviews originally conducted with 72 patients or family members about their views of the factors contributing to their self-reported harmful event. Interviews selected occurred 5 or more years after the harmful event and were grouped by time since event, 5 to 9 years (22 interviews) or 10 or more years (10 interviews) for analysis. We analyzed these interviews targeting spontaneous references of ongoing impacts experienced by the participants.
Error disclosure training and organizational culture
Error disclosure, teamwork, and safety culture all improved over a 3-year period during which disclosure training was provided to key faculty in these six institutions. Self‑reported likelihood to disclose errors also improved. The precise impact of the training on these improvements cannot be determined from this study; nevertheless, we present an approach to measuring error disclosure culture and providing training that may be useful to other institutions.
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).
A patient feedback reporting tool for OpenNotes: Implications for patient-clinician safety and quality partnerships
Patients and care partners reported potential safety concerns in about one-quarter of reports, often resulting in a change to the record or care. Early data from an OpenNotes patient reporting tool may help engage patients as safety partners without apparent negative consequences for clinician workflow or patient-clinician relationships.
OpenNotes: How the power of knowing can change health care
The OpenNotes initiative is engaging patients through shared clinical notes. What have we learned since its debut, and how will open access continue to change the health care landscape?
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