Participatory research in health promotion: a critical review and illustration of rationales

Abstract

In health promotion research, enthusiasm for patient and public involvement (PPI) is growing. However, a lack of conceptual clarity leads to ambiguities in participatory processes and purposes, and hampers efforts to achieve and evaluate PPI in research. This study provides an overview of its underlying reasons—or rationales—so as to better understand, guide and interpret PPI in research practice. We conducted a critical review to identify typologies of rationales for PPI. We re-categorized the different types of rationales from these typologies based on their content. We illustrated the resulting categories of rationales with examples from a case study on PPI in research on Lyme disease. Five categories of rationales for PPI were identified. The democratic rationale reflects the normative right of citizens to have a voice in research. The consumerist rationale refers to the economic right of stakeholders with interests to have a say. Rooted in social justice, the transformative rationale seeks to empower marginalized groups. The substantive rationale starts from epistemic considerations and aims to improve the quality of knowledge that research generates. The instrumental rationale is of pragmatic origin and refers to improved efficiency and effectiveness of the research. Our overview of categories of rationales can be used as a frame of reference for PPI in health promotion research. Exploring, stating explicitly and reflecting on the underlying reasons for PPI may help to define realistic purposes, select matching approaches and design appropriate evaluation studies. This might also contribute to the conceptualization of PPI.

Participatory research with carers: A systematic review and narrative synthesis

“…Often researchers reported that this was due to the systematic barriers described above, intensified when attempting to include carers from marginalized groups. Wider institutional understanding and support is required to provide the financial resources and opportunities that communicate to carers the value of their contributions 90,165 and fulfil the emancipatory potential of participatory research 163,166 …”

“…Wider institutional understanding and support is required to provide the financial resources and opportunities that communicate to carers the value of their contributions 90,165 and fulfil the emancipatory potential of participatory research. 163,166 This review found diverse and inconsistent descriptions of carer involvement, and a lack of clarity around terminology persists. 157 This search found studies claiming to use participatory methods where carers had only piloted materials or participated in interviews, corroborating worries that terms such as coproduction are being misused and diluted.…”

Recruiting and engaging adolescents in creating overweight and obesity prevention policies: The CO‐CREATE project

“…The principles of PAR include that community members are actively participating in every phase of the process, that is, researchers and community members are in mutually respectful partnership, bringing different strengths to the table. 25 The community members have situated knowledge and lived experience that is critical to a comprehensive understanding of the situation. [26][27][28] The principles of PAR include "a cooperative, iterative process of research and action in which non-professional community members are trained as researchers and change agents, and power over decisions are shared among the partners in the collaboration."…”

“…The principles of PAR include that community members are actively participating in every phase of the process, that is, researchers and community members are in mutually respectful partnership, bringing different strengths to the table 25 . The community members have situated knowledge and lived experience that is critical to a comprehensive understanding of the situation 26–28 …”

Ethical considerations in health psychology

“…While the participation ladder originates from the late sixties of the last century, the enthusiasm for patient and public involvement (PPI) in health research is growing more recently. In a critical review (Harting et al, 2022), five rationales for PPI are identified: (1) the democratic rationale reflects the normative right of citizens to have a voice in research;…”