Consumer engagement in occupational therapy health‐related research: A scoping review of the Australian Occupational Therapy Journal and a call to action

Abstract

Introduction Consumer engagement in research is becoming an ethical, political, and moral imperative. The aim of this scoping review was to provide a snapshot of the current status of the emerging area of consumer engagement in occupational therapy health‐related research, as published in the Australian Occupational Therapy Journal. Methods A scoping review was conducted of all health‐related original research published in the Australian Occupational Therapy Journal for 5½ years, plus Early View, as at June 2019. Eligible papers were examined for consumer engagement content which included any active choice or control by consumers, beyond being a research participant. A recognised six stage methodology was used with quantitative and qualitative data analysed. Two consumers collaborated in interpreting the data including finalising themes, leading theme naming, developing key discussion points, and producing recommendations. Results Of the 123 eligible papers, 48 (39.02%) included consumer engagement. However, only two incorporated consumer engagement across all research phases—preparation, execution and translation. A total of 103 consumer engagement activities were charted and categorised across all papers. There were limited instances of consumer collaboration (14/103, 13.59%) or consumer‐led research processes (15/103, 14.56%) reported. Four themes emerged: Parity in research partnerships; It's important to know the Who, What, When, How and So What of consumer involvement; Consumer engagement must be a two‐way process—not a dead end street; and Meeting the challenge—being diverse and inclusive. Conclusion Comprehensive consumer‐researcher partnerships may not be common‐place in health‐related occupational therapy research in the Australian Occupational Therapy Journal. This paper is a call to action. Occupational therapists must embrace consumer research partnerships as a demonstration of the key philosophies of enabling and empowering consumers and communities. Collaboration with two consumers in finalising data analysis, results interpretation and reporting added a diverse and valuable perspective.

Different in so many ways: Exploring consumer, health service staff, and academic partnerships in a research advisory group through rapid ethnography

“…This study has demonstrated that with careful planning and recruitment, capable facilitation with the support of a committed research team (inclusive of consumers), and empowering meeting processes and structures, a shortterm RAG of 12 people resulted in many benefits to participants and enhanced research outcomes of an eDelphi study. These findings add to the limited research regarding RAGs and provide useful information for occupational therapists who have been called to demonstrate the profession's central tenets of person-centeredness and power-sharing through CCI in research (Cox et al, 2020;Hammell et al, 2012). The meaningful deliberations and interactions as peers between consumers, health-care staff, and academic researchers were commended as a novel experience, despite all RAG members having been involved in other CCI work, albeit mainly in QI rather than research.…”

Measurable outcomes of consumer engagement in health research: A scoping review

“…Five of the eight core outcomes reflect the impact of consumer engagement on the research: (1) trust in the institution, (2) empowerment, (3) respect, (4) confidence in the outcomes of the research, and (5) transparency of the research process. Three of the eight core outcomes were relevant to the success of consumer engagement programs: (6) satisfaction with the consumer engagement program, (7) knowledge and experiences, and (8) degree of consumer engagement. Additional outcomes which pertained to specific stakeholder groups included representativeness and diversity of the consumer groups, and research relevance (for the consumer group), funding opportunities, and quality/validity of the research (for the researcher and institution), and recruitment/retention rates, translation and dissemination of research, and interpretation of results (for researchers).…”

“…Consumer engagement involves research carried out with, or by consumers, rather than to, about, or for them ( 2 ). Therefore, the aim of authentic consumer engagement is to advance consumers beyond the role of passive research participants and promote them to a position of active contributor and co-partner in the research ( 6 , 7 ).…”

Co-produced capability framework for successful patient and staff partnerships in healthcare quality improvement: results of a scoping review

“…The associated publication details patient learning and development processes including sharing expectations, role clarification, best practice research engagement principles, scoping review methodology and qualitative data analysis. 31 The research team built on the learning and met 13 times, over 10 months for approximately 23 hours in total for the current review. Patient learning and development was flexible, occurred as required, Systematic review and addressed their expressed and anticipated learning needs.…”