Interaction and innovation: practical strategies for inclusive consumer-driven research in health services

Abstract

IntroductionDespite advances in the co-creation of clinical research involving consumers in the last few decades, consumer engagement in health services research generally remains inconsistent and is too often treated as a perfunctory exercise.ObjectiveDrawing on a health services study on diagnostic test result management, communication and follow-up, we: (1) outline practical strategies used to enhance the contribution of health consumer representatives across all stages of health services research, including active involvement in prioritising objectives for data analysis and participating in data analysis and the dissemination of findings; and (2) describe the impact of continued engagement of consumers on the programme of research, the interpretation of findings and their translational potential.Key innovationsKey enabling innovations for engagement included: (1) planned opportunities for long-term consumer involvement across all stages of the research process from conception to dissemination; (2) enhanced consumer engagement capacity; (3) purposeful recruitment of appropriately trained consumers; (4) provision of support structures for active consumer involvement in research design, analysis and write-up; and (5) financial support for consumer involvement.Impact/ConclusionEnhancing consumer contribution and establishing inclusive research design requires a negotiated, interactive, meaningful and transparent process. As a collaborative approach, consumer-driven research involvement offers opportunities for new, often unexpected or unexplored perspectives to feature across the whole research process. In a move away from tokenistic consumer involvement, consumers and researchers who participated in this novel and immersive research project identified inclusive research as a powerful tool to enhance health services research and its translation into effective policy.

Can patients contribute to enhancing the safety and effectiveness of test‐result follow‐up? Qualitative outcomes from a health consumer workshop

“…However, the microlevel of thematic analysis painted a vivid picture of consumers’ experiences and provided invaluable insight into the role that patients may be undertaking in acting as a safety net for missed test‐results. From a methodological and analytical standpoint, the CRWG also presented innovative opportunities to include interpretative lenses outside traditional health service research and academia; not just recording the patient voice on the frontline but ensuring consumers’ voices is represented in data analysis as well 24,41,42 . The collaborative analysis and identification of additional threats to quality and safety highlight the complexity of the diverse realities faced by patients.…”

“…Consumer representatives were recruited using targeted advertisements for volunteers, and the strategies underlying the targeted recruitment have been previously published 24 in detail. Post‐recruitment, invitation letters including the workshop date, time, purpose, location, transport information and contact details for a member of the research team (the consumer ‘co‐ordinator’) were mailed out.…”

“…23 The rationale, practical and strategic approach to health consumer involvement in the CRGW has been reported elsewhere. 24 The purpose of the current study was to report the outcomes and key findings from the CRGW focussing specifically on the first aim of the workshop, namely to 'Identify key health consumer perspectives and experiences based on the challenges they have faced with test-results management', with the aim of identifying areas where patient safety could potentially be improved in consumer interaction with the management of test-results.…”

COVID-19 – Protocol for Observational Studies Utilising Near Real-Time Electronic Australian General Practice Data to Promote Effective Care and Best-Practice Policy – A Design Thinking Approach

“…2) The generation of timely and critical evidence about the impact of the COVID-19 pandemic across the following care [34,35]. The Consumer Reference Group was initiated following a national stakeholder forum (which brought together representatives from 14 stakeholder groups including patient organisations, clinicians and healthcare professionals) that outlined key patient safety challenges related to the utilisation of digital health and the diagnostic process [35].…”

“…Each of the project partners have strong track records of collaborative research which includes engagement with patients and the public. The Macquarie University research team has an established Consumer Reference Group made up of consumer representatives who have contributed to the design, development and promulgation of research aims [34,35]. The Consumer Reference Group was initiated following a national stakeholder forum (which brought together representatives from 14 stakeholder groups including patient organisations, clinicians and healthcare professionals) that outlined key patient safety challenges related to the utilisation of digital health and the diagnostic process [35].…”