TY - JOUR
T1 - Ethical Considerations in Public Engagement: Developing Tools for Assessing the Boundaries of Research and Involvement
AU - Garcia Iglesias, Jaime
AU - Beange, Iona
AU - Davidson, Donald J
AU - Goopy, Suzanne
AU - Huang, Huayi
AU - Murray, Fiona
AU - Porteous, Carol
AU - Stevenson, Elizabeth
AU - Rhodes, Sinead
AU - Watson, Faye
AU - Fletcher-Watson, Sue
PY - 2024/8/7
Y1 - 2024/8/7
N2 - Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.
AB - Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.
KW - Public engagement
KW - Ethical approval
KW - Ethical review
KW - Power
KW - Responsibility
KW - Managing risks
KW - Patientoriented research
KW - Patient-centred research
U2 - 10.1186/s40900-024-00617-8
DO - 10.1186/s40900-024-00617-8
M3 - Article
SN - 2056-7529
VL - 10
JO - Research Involvement and Engagement
JF - Research Involvement and Engagement
M1 - 83
ER -