5 minute read
What a difference consumers make
Better together in partnership
A revolution is underway in health services research and design, with the voices of consumers now essential to knowledge creation. Increased recognition of the importance of integrating consumer perspectives into health services research has opened diverse channels inviting consumer engagement in, including in consumer reference groups.
Here we showcase the experiences of the Consumer Reference Group (CRG) at the Australian National University’s Institute for Communication in Health Care (ICH). Established in 2021 by Dr Mary Dahm during the COVID-19 pandemic, the virtual CRG brings together patient advocates and health consumers from across Australia. Together with two consumer co-facilitators, Dr Ann Lawless and Dr Janney Wale, Mary convenes the group every six weeks to discuss the Institute’s current and future research projects.
The CRG is not just participating in ICH research— consumers are actively shaped by and shaping it— working hand-in-hand with researchers to co-design studies, undertake literature reviews, analyse data and co-author publications. This collaborative partnership ensures that research is patient-centred and also directly addresses language, content and patient communication needs, aligning academic inquiry with consumer lived experience. At the same time, researchers are becoming more comfortable talking about their research with us and we are developing trusted relationships
We focus on the potential of groups like ours to bridge the gap between academic and consumer expertise, ensure equitable research practices, and cultivate a culture of shared learning and leadership that will ultimately benefit healthcare delivery.
Bridging the gap: expertise and equity
Members bring to the CRG a tremendous wealth of knowledge and invaluable expertise about patient and caregiver experiences within the healthcare system. This deep understanding stems lived experience, participation on government and industry advisory boards and project management committees, as well as academic pursuits.
Reflecting on their experience collaborating with ICH researchers, CRG members highlight the value they bring to the partnership. ‘Each member brings their lived experience to the meetings and the Institute’s projects,’ says Marg Fagan. ‘We are a group with wide-ranging skills,’ adds Maureen Williams. ‘This enables us to share our personal stories and life experience as well as learning from each other. These collective skills are proving to be an important factor to researchers.’
Laila Hallam describes the beauty of collaboration stemming from the different strengths brought by consumers and researchers. Consumers’ expertise encompasses the emotional and practical realities of illness and, treatment, and care and offers a crucial counterpoint to researchers’ methodological strengths. ‘Bringing the two distinct areas of expertise together as equals,’ Laila explains, ‘allows expertise to surface; assumptions and biases to be outed, challenged and considered.’ This collaborative process leads to ‘analysis, insights and conclusions that are more considered, rigorous and balanced’.
Learning from each other and leading together — a case study
Our Australian Research Council-funded project, led by Mary and supported by PhD Candidate Laura Chien, investigates the communication of uncertainty in emergency departments. Both researchers treasure the learning opportunities afforded by collaborating with the CRG, who have been involved since project’s inception.
‘Every meeting serves as an informal mentoring session,’ Laura says, ‘as I listen to our members critically engage with our work. They offer insightful perspectives and constructive suggestions for improvement in an open and collaborative manner’.
‘Working in partnership with CRG members ensures consumer perspectives are embedded in this project and generally in the institute’s research,’ Laura continues, ‘supporting community relevance and translational impact’. The consumers’ insights help ensure that our research is accountable to and ultimately benefits patients and caregivers.
In this project, consumers and researchers are working collaboratively to:
Shape the study scope and research questions to ensure relevance
Provide advice and conceptual and practical input on the study design and consumer facing elements such as participant information sheets and participant interview guides
Support project delivery and quality, and ensure ethical safety of study participants
Involve two community-based researchers in analysing data
Integrate the groups’ perspectives in interpreting results
Involve consumers in sharing findings through publications and conferences
Provide leadership opportunities for consumers on the project advisory board
As part of the project, Mary collaborated with the CRG and Health Care Consumers’ Association of the ACT to offer a free hybrid workshop series to build consumer research capacity, ultimately empowering them to actively shape and contribute to healthcare research. The five 1-hour workshops introduced consumers to research principles, approaches and procedures, including research ethics, data analysis and the publication process.
A collaborative partnership
Although our group is just starting out, our achievements to date have recently been recognised with Mary being awarded the inaugural ACT Health CHARM Rising Star Award for consumer engaged research promoting inclusivity and transparency.
Mary is aware of the powerful potential and mutual benefits that genuine collaboration can realise. ‘Consumers offer invaluable perspectives enabling researchers to gain a deeper understanding of patient needs,’ says Mary.
Collaboration will be key to developing more relevant, effective, and empathetic healthcare delivery and communication strategies, and ultimately lead to better healthcare for all.
We hope our collaborative mentoring and learning approach can serve as an inspiring example for others to explore the power of consumer involvement in research.
