Using an evidence-informed co-design approach to develop a mechanism to measure experiences of the open disclosure process: an Irish case study.

Abstract

Introduction: Open disclosure (OD) is an open discussion with a patient and/or family member about an incident(s) that resulted in harm to that patient while they were receiving healthcare. It is widely considered an ethical and moral imperative and is what patients and families want when harm occurs. However, there is a dearth of research on patient and family experiences of OD and limited measures available to measure the quality of current processes. This research aimed to address this gap by using an evidence-informed approach to working with experts by experience to co-design a mechanism to measure patient experience of OD.

Methods: We adopted a co-design approach, which involves partnering with stakeholders in the healthcare system to address a shared goal and working collaboratively to develop consensus about how best to address an identified challenge. A co-design team was established which included experts by experience (those with direct patient/family experience of OD; n = 5), patient advocates (n = 2), patient and service user engagement leads in the health system (n = 2), quality and patient safety managers/advisors (n = 3), members of the National Open Disclosure Team (n = 3) and academics/researchers (n = 3). A one-day in-person workshop was held using the World Café approach whereby a series of small group discussions on sub-topics helped develop consensus on how to measure experience.

Results: Participants agreed that a brief survey, focusing on key aspects of the OD process would be the optimal way for patients and relevant others to provide feedback that could support learning and quality improvement. Participants acknowledged the use of open text comment boxes within the survey would be useful to allow respondents to elaborate on their experience further, if desired. Furthermore, the survey should provide the option for the respondent to indicate if they would like to speak to someone about their experience of OD in more detail. The co-design team agreed that everyone who has experience of OD, regardless of level of harm, should be eligible and invited to take part in providing feedback on their experiences. A draft survey was developed by the group and is presented in full.

Conclusions: This paper documents the co-design approach adopted on this sensitive topic and shares recommendations that emerged from the co-design process of how experiences of OD should be measured for the purposes of improvement. While the survey was deemed optimal by co-design group members, it is acknowledged that this could be challenging for some to complete. This draft survey, however, offers a valuable starting point to understanding if the process is working as intended for patients and families who experience harm.