Disrupting power hierarchies: applying a trauma- informed, intersectional, reflexive engagement strategy

Abstract

People with lived experience in health care, like patients and their family and/or friend caregivers, are important to include in the research process to improve impact and relevance of research. However, these lived experience researchers (LERs) can be harmed if this engagement is done poorly, especially though tokenization, or through the reliving of health care related traumatic experience. Five LERs joined a research team that collaboratively developed a research proposal through seven workshops. The research topic was of care transitions from hospital to home, of which all five LERs had lived experience as patients or caregivers. To mitigate harm for the LERs, the project was designed with a trauma-informed, intersectional and reflexive approach, with a focus on disrupting historical power structures inherent in research and health care systems. The engagement design was planned a priori and uniquely incorporated regular feedback mechanisms and strategies to support reflexivity for all team members. This engagement strategy had some success in disrupting standard power hierarchies that persist in research teams and can impede meaningful LER engagement. Ultimately the LERs felt heard and understood by the team and developed strong relationships with the principal investigator (PI) and project coordinator, and they contrasted this experience with other health and research experiences where they perceived their input to have less weight. The reflexive approach revealed what aspects of the engagement were going well, and which continued to be plagued by historical power and hierarchies inherent in academic and health systems. While the continual feedback process did not allow the team to completely overcome these hierarchies, it brought them to light so that they could be addressed as much as possible within the context of the project, and we share three examples in this commentary. We hope that this detailed description of developing a research proposal using a power-focused framework with a team with multiple LERs helps to address the gap in the literature about how researchers can support the reduction of power hierarchies when engaging LERs. Plain English summary: People with lived experience in health care, like patients and their family and/or friend caregivers, are important to include in the research process as research team members. However, these lived experience researchers (LERs) can be harmed if this engagement is done poorly, especially when dealing with a topic where the LERs have had harmful experiences. This was the case when academic researchers wanted to include LERs on a research team to develop a project on care transitions from hospital to home for older adults. To mitigate harm for the LERs as much as possible, the project was designed with a trauma-informed, intersectional and reflexive approach. A trauma-informed approach promotes safety and choice to avoid re-triggering of past traumas. An intersectional approach acknowledges that multiple intersecting systems of oppression contribute to an individual or group’s power and privilege and works to disrupt these systems. Reflexivity is a personal process of examining and critiquing the assumptions and worldviews of oneself and one’s contexts to challenge the status quo and move towards equity and justice. The engagement design included feedback mechanisms to determine what was going well with the engagement strategy, and to make necessary adjustments. Through this paper, we aim to support researchers in planning how to conduct patient research engagement in a way that reduces power hierarchies and harm to LERs so that LERs can participate fully and safely in research.