Disclosure of adverse events: a data linkage study reporting patient experiences among Australian adults aged ≥45 years

Abstract

Since Australia initiated national open disclosure standards in 2002, open disclosure policies have been adopted in all Australian states and territories. Yet, research evidence regarding their adoption is limited. The aim of the present study was to determine the frequency with which patients who report an adverse event had information disclosed to them about the incident, including whether they participated in a formal open disclosure process, their experiences of the process and the extent to which these align with the current New South Wales (NSW) policy. A cross-sectional survey about patient experiences of disclosure associated with an adverse event was administered to a random sample of 20000 participants in the 45 and Up Study who were hospitalised in NSW, Australia, between January and June 2014. Of the 18993 eligible potential participants, completed surveys were obtained from 7661 (40% response rate), with 474 (7%) patients reporting an adverse event. Of those who reported an adverse event, a significant majority reported an informal or bedside disclosure (91%; 430/474). Only 79 patients (17%) participated in a formal open disclosure meeting. Most informal disclosures were provided by nurses, with only 25% provided by medical practitioners. Experiences of open disclosure may be enhanced by informing patients of their right to full disclosure in advance of or upon admission to hospital, and recognition of and support for informal or bedside disclosure for appropriate types of incidents. A review of the open disclosure guidelines in relation to the types of adverse events that require formal open disclosure and those more suitable to informal bedside disclosure is indicated. Guidelines for bedside disclosure should be drafted to assist medical practitioners and other health professionals facilitate and improve their communications about adverse events. Alignment of formal disclosure with policy requirements may also be enhanced by training multidisciplinary teams in the process. While open disclosure is required in all cases of serious adverse events, patients' experiences are variable, and lack of, or poor quality disclosures are all too common. This paper presents experiences reported by patients across New South Wales in a large cross-sectional survey. Unlike previous studies of open disclosure, recently hospitalised patients were identified and invited using data linkage with medical records. Findings suggest that most patients receive informal disclosures rather than a process that aligns with the current policy guidance. Experiences of open disclosure may be enhanced by informing patients of their right to full disclosure in advance of or upon admission to hospital, and recognition of and support for informal or bedside disclosure for appropriate types of incidents.

Nurses’ perceptions of open disclosure processes in cancer care: a cross-sectional study

“…Nurses' perceptions of the proportion of patients being told about errors as soon as they happen and getting an explanation of why the event occurred were also much lower than what was reported by outpatients in previous studies (Bryant et al, 2017;Carey et al, 2019). Although these findings are not directly comparable due to nurses reporting on a global rate of disclosure while patients in the previous study reported on a single event, the findings do align with previous research demonstrating low adherence to open disclosure processes (Finlay et al, 2013;Harrison, Walton, Smith-Merry, Manias, & Iedema, 2019;Walton et al, 2018). While examining patient-reported health care error rates remains an important area of quality assurance and patient-centred care, these rates will likely underestimate error rates in cancer clinics until open disclosure is common practice.…”

“…In a seminal US study, 42% of over 1800 members of the public reported having an error in their own or family members' health care (Blendon et al, 2002). In a recent large-scale study of adults aged 45 years or over in New South Wales (NSW), 7% of the 7661 respondents reported having an adverse event, most of which related to clinical processes and procedures (33%) or medications and intravenous fluids (21%) (Walton et al, 2018).…”

“…Despite positive attitudes, challenges associated with adhering to open disclosure practice have been reported by patients, health professionals and policy makers (Iedema et al, 2011). For instance, in a large-scale study of patients in NSW, formal disclosure processes reportedly were followed in only 17% of cases where an adverse event occurred (Walton et al, 2017(Walton et al, , 2018. Most informal disclosures (i.e., those that occur (usually at the bedside) outside the policy framework) were provided by nurses, with only 25% provided by medical practitioners (Walton et al, 2018).…”

“…For instance, in a large-scale study of patients in NSW, formal disclosure processes reportedly were followed in only 17% of cases where an adverse event occurred (Walton et al, 2017(Walton et al, , 2018. Most informal disclosures (i.e., those that occur (usually at the bedside) outside the policy framework) were provided by nurses, with only 25% provided by medical practitioners (Walton et al, 2018). While most haematology patients in a previous study were told about the event as soon as it happened (62%) and were given an explanation (75%), fewer were informed about how they could escalate the matter if they wanted to (43%) (Bryant et al, 2017).…”

<p>Open disclosure of adverse events: exploring the implications of service and policy structures on practice</p>

“…Policy makers, clinicians, and patients agree that transparency and honesty after adverse events are beneficial for patient care; yet, the implementation of OD in practice has been challenging 2. Evidence to date highlights the uncertainties and interpersonal challenges associated with OD practice in studies with patients and health professionals 4–7. While the ethical arguments for OD are strong, there are many stakeholders, and the implementation of OD is impacted by their perspectives.…”