2022 Seminar 2: Marian Barrett Lecture: Embedding consumer participation in research

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In 1945, Sir James William Barrett made a bequest to The University of Melbourne to provide a lecture on a subject of interest to Nursing and Medical professors and 1953, an inaugural Marian Barrett Lecture was delivered. Since 1997, the Marian Barrett Lecture has become an annual event and a highlight of our Nursing calendar at The University of Melbourne.

Involving consumers and community members in all aspects of research has been recognised as an important and beneficial strategy. The level of involvement can vary across a wide continuum from simply providing information to shared leadership and decision making in all aspects of the research conduct.

In some countries or funding programmes a requirement for effective consumer and community involvement is linked with research funding decisions. Although consumer involvement is rarely mandated within the Australian research setting, there is clear guidance regarding the expectations. Benefits of incorporating consumer participation in research vary depending on the setting and degree of involvement. These might include improved focus of research on what is important to consumers, empowering members of the community to be actively involved in research, having public support for research and dissemination, improving consumer confidence in health research, and increasing the potential to influence change as a result of our research.

Despite the many benefits there are also likely to be challenges in involving consumers and community members in research as this frequently represents a new way of working. Some challenges that might be experienced include providing appropriate training to enable consumers to contribute in a meaningful way, ensuring discussions incorporate the voice of all, recognising that not all consumers are able to balance their personal experience and agenda with that of the research team and providing adequate support and resourcing to enable consumers to participate in team activities.

Different models and strategies exist for involving consumers and community members in research. The specific strategies that nurses might use to embed consumer involvement in their research will vary depending on the specific activities and goals of the research project or programme, as well as the desires and capability of each individual consumer. Despite this variation some common principles should include:

• Clear and agreed processes for communication
• Respectful approach in giving and receiving information
• Recognition of the value in having people with different perspectives inform the development and conduct of research
• Appropriate compensation for time and expenses
• Relevant training in both the specific aspects of the research project or programme as well as the general principles of consumer involvement in research.

While there are pockets of excellence in consumer involvement in research, this is not yet a universal feature of research and nurses can and should be at the forefront of driving this change.

Presented by  Professor Leanne Aitken

Professor Leanne Aitken is Professor of Critical Care and Associate Dean (Research, Enterprise & Global Engagement) at City, University of London. Her programme of research focuses on recovery after critical illness and injury and a range of clinical practice issues within critical care. Leanne is an Academic Title Holder with Griffith University, Australia, and an Ambassador for the World Federation of Critical Care Nurses. She is a Fellow of the American Academy of Nursing, the Australian College of Nursing and the Australian College of Critical Care Nurses and is a Fulbright Alumnus. Leanne has published more than 150 original peer-reviewed publications, edits the textbook Critical Care Nursing and has secured more than $AUD23 million (£12.6m) in research and research training funding over her career.