Barbara Sarnoff Lee

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 others 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.

A Clinician’s Guide to Privacy and Communication in the ICU

Objective: To review the legal issues concerning family members’ access to information when patients are in the ICU. Data Sources: U.S. Code, U.S. Code of Federal Regulations, and state legislative codes. Data Extraction: Relevant legal statutes and regulations were identified and reviewed by the two attorney authors (L. F., M. A. V.). Study Selection: Not applicable. Data Synthesis: Review by all coauthors. Conclusions: The Health Insurance Portability and Accountability Act and related laws should not be viewed as barriers to clinicians sharing information with ICU patients and their loved ones. Generally, under Health Insurance Portability and Accountability Act, personal representatives have the same authority to receive information that patients would otherwise have. Persons involved in the patient’s care also may be given information relevant to the episode of care unless the patient objects. ICUs should develop policies for handling the issues we identify about such information sharing, including policies for responding to telephone inquiries and methods for giving patients the opportunity to object to sharing information with individuals involved in their care. ICU clinicians also should be knowledgeable of their state’s laws about how to identify patients’ personal representatives and the authority of those representatives. Finally, ICU clinicians should be aware of any special restrictions their state places on medical information. In aggregate, these strategies should help ICU managers and clinicians facilitate robust communication with patients and their loved ones.

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.

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.