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. RESULTS: A total of 6913 (28%) of 24,722 patients at an adult hospital and 3672 (17%) of 21,579 participants at the children's hospital submitted surveys. Approximately 75% of patients and parents each reported that reading notes helped them understand the reason for both tests and referrals, and approximately 50% felt that it helped them complete tests and referrals. Roughly 75% of participants were more likely to check and understand test results. Overall, 97% of participants reported that trust in the provider, activation, patient-provider goal alignment, and teamwork were each better or the same after reading 1 note or more. Nonwhite participants and those with high school education or less were 30% to 50% more likely to report that reading notes helped them complete tests compared with white and more educated respondents, respectively. CONCLUSIONS: Overall, the majority of more than 10,000 patients and parents reported reading notes helped them understand and follow through on tests and referrals. As information transparency spreads, OpenNotes can help activate patients and families, facilitate safety behaviors, and forge stronger partnerships with clinicians.

Increasing Patient-Clinician Concordance About Medical Error Disclosure Through the Patient TIPS Model.

OBJECTIVE: To test whether an educational model involving patients and family members (P/F) in medical error disclosure training for interprofessional clinicians can narrow existing gaps between clinician and P/F views about disclosure. METHOD: Parallel presurveys/postsurveys using Likert scale questions for clinicians and P/F. RESULTS: Baseline surveys were completed by 91% (50/55) of clinicians who attended the workshops and 74% (65/88) of P/F from a hospital patient and family advisory council. P/F's baseline views about disclosure were significantly different from clinicians' in 70% (7/10) of the disclosure expectation items and 100% (3/3) of the disclosure vignette items. For example, compared with clinicians, P/F more strongly agreed that "patients want to know all the details of what happened" and more strongly disagreed that "patients find explanation(s) more confusing than helpful." In the medication error vignette, compared with clinicians, P/F more strongly agreed that the error should be disclosed and that the patient would want to know and more strongly disagreed that disclosure would do more harm than good (all P < 0.05). After the workshop, P/F and clinician views about information sharing, fallibility, truth telling, and threshold for disclosure showed greater concordance, with significant differences remaining in less than half of the expectation items and none of the vignette responses. DISCUSSION: Even with self-selecting clinicians, collaborative learning with P/F highlights important differences in patient and clinician baseline perspectives about medical error disclosure and brings patient and clinicians views closer together.

Development of a framework to describe patient and family harm from disrespect and promote improvements in quality and safety: a scoping review.

PURPOSE: Patients and families may experience 'non-physical' harm from interactions with the healthcare system, including emotional, psychological, socio-behavioral or financial harm, some of which may be related to experiences of disrespect. We sought to use the current literature to develop a practical, improvement-oriented framework to recognize, describe and help prevent such events. DATA SOURCES: Searches were performed in PubMed, Embase, PsychINFO, CINAHL, Health Business Elite and ProQuest Dissertations & Theses: Global: Health & Medicine, from their inception through July 2017. STUDY SELECTION: Two authors reviewed titles, abstracts, full texts, references and cited-by lists to identify articles describing approaches to understanding patient/family experiences of disrespect. DATA EXTRACTION: Findings were evaluated using integrative review methodology. RESULTS OF DATA SYNTHESIS: Three-thousand eight hundred and eighty two abstracts were reviewed. Twenty three articles were identified. Components of experiences of disrespect included: (1) numerous care processes; (2) a wide range of healthcare professional and organizational behaviors; (3) contributing factors, including patient- and professional-related factors, the environment of work and care, leadership, policies, processes and culture; (4) important consequences of disrespect, including behavioral changes and health impacts on patients and families, negative effects on professionals' subsequent interactions, and patient attrition from organizations and (5) factors both intrinsic and extrinsic to patients that can modify the consequences of disrespect. CONCLUSION: A generalizable framework for understanding disrespect experienced by patients/families in healthcare may help organizations better prevent non-physical harms. Future work should prospectively test and refine the framework we described so as to facilitate its integration into organizations' existing operational systems.

A Road Map for Advancing the Practice of Respect in Health Care: The Results of an Interdisciplinary Modified Delphi Consensus Study.

BACKGROUND: Most health care organizations' efforts to reduce harm focus on physical harm, but other forms of harm are both prevalent and important. These "nonphysical" harms can be framed using the concepts of respect and dignity: Disrespect is an affront to dignity and can cause harm. Organizations should strive to eliminate disrespect to patients, to families, and among health care professionals. METHODS: A diverse, interdisciplinary panel of experts was convened to discuss strategies to guide health care systems to embrace an expanded definition of patient harm that includes nonphysical harm. Subsequently, using a modified Delphi process, a guide was developed for health care professionals and organizations to improve the practice of respect across the continuum of care. RESULTS: Five rounds of surveys were required to reach predefined metrics of consensus. Delphi participants identified a total of 25 strategies associated with six high-level recommendations: "Leaders must champion a culture of respect and dignity"; with other professionals sharing the responsibility to "Promote accountability"; "Engage and support the health care workforce"; "Partner with patients and families"; "Establish systems to learn about and improve the practice of respect"; and "Expand the research agenda and measurement tools, and disseminate what is learned." CONCLUSION: Harm from disrespect is the next frontier in preventable harm. This consensus statement provides a road map for health care organizations and professionals interested in engaging in a reliable practice of respect. Further work is needed to develop the specific tactics that will lead health care organizations to prevent harm from disrespect.

Speaking up about care concerns in the ICU: patient and family experiences, attitudes and perceived barriers.

BACKGROUND: Little is known about patient/family comfort voicing care concerns in real time, especially in the intensive care unit (ICU) where stakes are high and time is compressed. Experts advocate patient and family engagement in safety, which will require that patients/families be able to voice concerns. Data on patient/family attitudes and experiences regarding speaking up are sparse, and mostly include reporting events retrospectively, rather than pre-emptively, to try to prevent harm. We aimed to (1) assess patient/family comfort speaking up about common ICU concerns; (2) identify patient/family-perceived barriers to speaking up; and (3) explore factors associated with patient/family comfort speaking up. METHODS: In collaboration with patients/families, we developed a survey to evaluate speaking up attitudes and behaviours. We surveyed current ICU families in person at an urban US academic medical centre, supplemented with a larger national internet sample of individuals with prior ICU experience. RESULTS: 105/125 (84%) of current families and 1050 internet panel participants with ICU history completed the surveys. Among the current ICU families, 50%-70% expressed hesitancy to voice concerns about possible mistakes, mismatched care goals, confusing/conflicting information and inadequate hand hygiene. Results among prior ICU participants were similar. Half of all respondents reported at least one barrier to voicing concerns, most commonly not wanting to be a 'troublemaker', 'team is too busy' or 'I don't know how'. Older, female participants and those with personal or family employment in healthcare were more likely to report comfort speaking up. CONCLUSION: Speaking up may be challenging for ICU patients/families. Patient/family education about how to speak up and assurance that raising concerns will not create 'trouble' may help promote open discussions about care concerns and possible errors in the ICU.

A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships.

BACKGROUND: OpenNotes, a national movement inviting patients to read their clinicians' notes online, may enhance safety through patient-reported documentation errors. OBJECTIVE: To test an OpenNotes patient reporting tool focused on safety concerns. METHODS: We invited 6225 patients through a patient portal to provide note feedback in a quality improvement pilot between August 2014 and 2015. A link at the end of the note led to a 9-question survey. Patient Relations personnel vetted responses, shared safety concerns with providers and documented whether changes were made. RESULTS: 2736/6225(44%) of patients read notes; among these, 1 in 12 patients used the tool, submitting 260 reports. Nearly all (96%) respondents reported understanding the note. Patients and care partners documented potential safety concerns in 23% of reports; 2% did not understand the care plan and 21% reported possible mistakes, including medications, existing health problems, something important missing from the note or current symptoms. Among these, 64% were definite or possible safety concerns on clinician review, and 57% of cases confirmed with patients resulted in a change to the record or care. The feedback tool exceeded the reporting rate of our ambulatory online clinician adverse event reporting system several-fold. After a year, 99% of patients and care partners found the tool valuable, 97% wanted it to continue, 98% reported unchanged or improved relationships with their clinician, and none of the providers in the small pilot reported worsening workflow or relationships with patients. CONCLUSIONS: 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.

Patients and families as teachers: a mixed methods assessment of a collaborative learning model for medical error disclosure and prevention.

BACKGROUND: 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. METHODS: 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. RESULTS: P/F and clinicians hoped to learn about each other's perspectives, communication skills and patient empowerment strategies. Before the intervention, both groups worried about power dynamics dampening effective interaction. Clinicians worried that P/F would learn about their fallibility, while P/F were concerned about clinicians' jargon and defensive posturing. Following workshops, clinicians valued patients' direct feedback, communication strategies for error disclosure and a 'real' learning experience. P/F appreciated clinicians' accountability, and insights into how medical errors affect clinicians. Half of participants found nothing challenging, the remainder clinicians cited emotions and enormity of 'culture change', while P/F commented on medical jargon and desire for more time. Patients and clinicians found the experience valuable. Recommendations about how to develop a patient-teacher programme in patient safety are provided. CONCLUSIONS: An educational paradigm that includes patients as teachers and collaborative learners with clinicians in patient safety is feasible, valued by clinicians and P/F and promising for P/F-centred medical error disclosure and prevention training.

Balancing digital information-sharing and patient privacy when engaging families in the intensive care unit.

Patients in intensive care units (ICUs) may lack decisional capacity and may depend on proxy decision makers (PDMs) to make medical decisions on their behalf. High-quality information-sharing with PDMs, including through such means as health information technology, could improve communication and decision making and could potentially minimize the psychological consequences of an ICU stay for both patients and their family members. However, alongside these anticipated benefits of information-sharing are risks of unwanted disclosure of sensitive information. Approaches to identifying the optimal balance between access to digital health information to facilitate engagement and protecting patient privacy are urgently needed. We identified eight themes that should be considered in balancing health information access and patient privacy: 1) potential benefits to patients from PDM data access; 2) potential harms to patients from such access; 3) the moral status of families within the patient-clinician relationship; 4) the scope of relevant information provided to PDMs; 5) issues around defining PDMs' authority; 6) methods for eliciting and documenting patient preferences about their family's information access; 7) the relevance of methods for ascertaining the identity of PDMs; and 8) the obligations of hospitals to prevent privacy breaches by PDMs. We conclude that PDMs should typically have access to health information from the current episode of care when the patient is decisionally impaired, unless the patient has previously expressed a clear preference that PDMs not have such access.

Predictors and correlates of dissatisfaction with intensive care.

OBJECTIVE: Dissatisfaction is an important threat to high-quality care. The aim of this study was to identify factors independently associated with dissatisfaction with critical care. DESIGN: Prospectively collected observational cohort study. SETTING: Nine intensive care units at a tertiary care university hospital in the United States. PARTICIPANTS: Four hundred forty-nine family members of adult intensive care unit patients who completed the Family Satisfaction with Care in the Intensive Care Unit instrument. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Four family-and patient-related factors ascertainable at intensive care unit admission independently predicted low overall satisfaction: living in the same city as the hospital, disagreement within the family regarding care, having a cardiac comorbidity but being hospitalized in a noncardiac-care intensive care unit, and living in a different household than the patient. When three or more risk factors were present, 63% (95% confidence interval 48%-78%) of families were dissatisfied. Among factors ascertained at the end of the intensive care unit stay, dissatisfaction with six items was independently associated with overall dissatisfaction: 1) perceived competence of nurses (odds ratio for dissatisfaction=5.9, 95% confidence interval 2.3-15.2); 2) concern and caring by intensive care unit staff (odds ratio 5.0, 95% confidence interval 1.9-12.6); 3) completeness of information (odds ratio 4.4, 95% confidence interval 2.4-8.1); 4) dissatisfaction with the decision-making process (odds ratio 3.0, 95% confidence interval 1.6- 5.6); 5) atmosphere of the intensive care unit (odds ratio 2.6, 95% confidence interval 1.4-4.8); and 6) atmosphere of the waiting room (odds ratio 2.7, 95% confidence interval 1.2-6.0). CONCLUSION: Specific factors ascertainable at intensive care unit admission identify families at high risk of dissatisfaction with care. Other discrete aspects of the patient/family experience that develop during the intensive care unit stay are also strongly associated with dissatisfaction with the critical care experience. These results may provide insight into the design of future evidence-based strategies to improve satisfaction with the intensive care unit experience.