Patient and family engagement is essential to effective and safe diagnosis. OurDX is a previsit online engagement tool to help identify opportunities to improve diagnostic safety in patients and families living with chronic conditions. In this study, researchers implemented OurDX in specialty and primary care clinics at two academic healthcare organizations and examined the potential safety issues and whether patient/family contributions were integrated into the post-visit notes. Qualitative analysis of 450 OurDX reports found that participants contributed important information about the diagnostic process. Participants with diagnostic concerns were more likely to raise concerns about the diagnostic process (e.g., access barriers, problems with tests/referrals, communication breakdowns), which may represent diagnostic blind spots.

Patients and families are encouraged to play an active role in patient safety by, for example, reporting inaccurate or incomplete electronic health record notes after visits. In this study, patients and families at two US healthcare sites (pediatric subspecialty and adult primary care) were invited to complete a survey (OurDX) before their visit to identify their visit priority, recent medical history/symptoms, and potential diagnostic concerns. In total, 7.5% of patients and families reported a potential diagnostic concern, mainly not feeling heard by their provider.

Patients who access their electronic health record (EHR) through a patient portal have identified clinically relevant errors such as allergies, medications, or diagnostic errors. This study focused on patient-identified diagnostic safety blind spots in ambulatory care clinical notes. The largest category of blind spots was diagnostic misalignment. Many patients indicated they reported the errors to the clinicians, suggesting shared notes may increase patient and family engagement in safety.

Limited English-language health literacy (LEHL) and disadvantaged socioeconomic position (dSEP) have been shown to increase risk of adverse events and near misses. Using data from the 2017 Institute for Healthcare Improvement-National Patient Safety Foundation study, researchers found, while respondents with LEHL or dSEP experienced diagnostic errors at the same rate as their counterparts, they were more likely to report unique contributing factors and more long-term emotional, physical, and financial harm.

This qualitative study explored the long-term impacts experienced by patients and family members involved in medical harm events. Participants described psychological, social/behavioral, and financial impacts and more than half reported ongoing physical impacts.

… were identified in each step of the diagnostic process. … Bell SK, Bourgeois F, DesRoches CM, et al. Filling a gap in …

Providing patients access to their medical records can improve patient engagement and error identification. A survey of patients and families found that about half of adult patients and pediatric families who perceived a serious mistake in their ambulatory care notes reported it, but identified several barriers to reporting (e.g. no clear reporting mechanism, lack of perceived support).  

… unprofessional behavior. … Kesselheim JC, Shelburne JT, Bell SK, et al. Pediatric trainees' speaking up about …

This study surveyed over 22,800 patients across three health care organizations to assess how often patients who read open ambulatory visit notes perceive mistakes in the notes. The analysis found that 4,830 patients (21%) perceived a mistake in one or more notes in the past 12 months and that 42% of those patients considered the mistake to be somewhat or very serious. The most common very serious mistakes involved incorrect diagnoses; medical history; allergy or medication; or tests, procedures, or results. Older and sicker patients were more likely to report a serious error compared to younger and healthier patients. Using open notes and encouraging patient engagement can improve record accuracy and prevent medical errors

Providing patients – particularly elderly, less educated, non-white, and non-English speaking patients – with access to their medical records via ‘open notes’ can improve engagement in care; however, these demographic groups are also less likely to take advantage of these e-tools. The authors summarize the preliminary evidence and propose steps to increasing use of open note portals among disadvantaged patients.

… doctors/facilities involved in the error. … Prentice JC, Bell SK, Thomas EJ, et al. Association of open communication …

OpenNotes enables patients and their designated caregivers to access medical records and provider documentation. Research has shown that this access may have the potential to improve medication adherence and patient engagement, and that patients may be able to identify errors in documentation. In this study performed at three distinct medical centers, researchers evaluated the effects of implementing a system for patients and families to report mistakes they saw in outpatient documentation. Of the 1440 reports obtained, 27% suggested possible inaccuracies and frequently prompted a change in the medical record. Symptom descriptions, past medical history, and medications were most commonly identified as areas of potential discrepancy by patients and families. An Annual Perspective discussed mechanisms for engaging patients as partners in safety.

Prior research has shown that when patients have access to clinicians' notes, they may identify relevant safety concerns. In this study, 9550 obstetrics and gynecology patients were provided with access to their outpatient visit documentation. Almost 70% of eligible patients read one or more notes during the study period, but only 3.2% shared feedback through 232 electronic reports. Of patients who provided feedback, 27% identified errors in the documentation; provider reviewers determined that 75% of these could impact care.

OpenNotes provides patients with access to their health care provider’s documentation. This study found that patient access to such documentation may have the potential to improve medication adherence. A past PSNet interview discussed the OpenNotes project.

Despite growing support for patient involvement in safety and quality improvement, little is known about engaging patients as partners in reducing diagnostic error. This commentary summarizes research on how sharing notes with patients can improve the timeliness of follow-up to confirm a diagnosis, identify documentation errors, and strengthen communication between the clinical team and the patient. The authors discuss challenges to the successful implementation of this strategy and areas of focus needed for future development. A PSNet interview discussed use of OpenNotes to engage patients in their care.

Communication-and-resolution programs are designed to build healing relationships, offer appropriate compensation, and facilitate organizational learning after a harmful medical error. Although some success has been achieved, communication-and-resolution programs have yet to be widely implemented across the health system. This commentary discusses policy, safety outcome evidence, monetary, and program design weaknesses as prominent barriers to wide-scale implementation. The authors recommend aligning the programs to foundational concepts of safety and patient-centeredness to help drive progress.

The Toyota manufacturing model "stop the line" encourages workers to stop the production line if they notice something is wrong. This commentary discusses how this philosophy can enable patients to speak up for safety both during care interactions or after events to incorporate their knowledge into improvement efforts.

A critical component of strong safety culture is that patients and families feel empowered to speak up about safety concerns. Patients and families are often the first to notice changes in their well-being and consistently identify unique adverse events that are not detected through provider-driven means. This cross-sectional survey asked patients currently hospitalized in an intensive care unit (ICU) and their families about their comfort discussing safety concerns with their health care team, then validated those responses with an Internet-recruited nationwide cohort of patients and families who had been previously cared for in ICUs. Many current ICU patients and families expressed some reticence to speak up. Common reasons cited were concern that the health care team was too busy, fear of being labeled a troublemaker, and worry that the team would judge them for not understanding the medical details of their care.

Disclosure of medical errors to patients and families is recommended, but such conversations can have negative consequences for all involved if done incorrectly. This commentary describes a disclosure coaching initiative, including the toolkit and tactics used to help clinicians develop skills needed to ensure appropriate and effective communication during these stressful interactions.

Preventable harm can inflict lasting emotional damage on patients and families. Although many safety experts have examined how adverse events affect health care workers (second victims), patients' emotional experience of these events has garnered less scientific attention. The Agency for Healthcare Research and Quality convened diverse stakeholders, including patients, to identify research priorities to better elucidate how adverse events emotionally impact patients and families. They identified 4 priorities and delineated 20 steps organizations can take immediately to support those who experience adverse events, such as involving patients and families in developing solutions, incorporating emotional harm in organizational approaches to safety, and engaging patient advocates and leaders in improvement work. An Annual Perspective examined the shift toward a just culture in patient safety, which requires reckoning with the impact of errors on patients and families.