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Margaret

Margaret Wallen

Year of Award: 2016 Award State: New South Wales Health And Medicine > Diseases, Disorders And Syndromes
To harness the expertise of international research centres respected for their partnership with consumers and apply the learnings to Cerebral Palsy research in Australia - Canada, USA, Netherlands, UK
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Major lessons and conclusions

I undertook to explore four main issues as part of this Fellowship.

The first was to identify effective infrastructure to support consumer engagement. There is no single way to engage with consumers as partners in research. Consumers may be involved in discrete tasks which contribute to a research project, all the way through to leading research; in identifying and prioritising research questions in a field, in planning study design and methodology, implementing the study and/or disseminating the results to streamline uptake of the findings to make a difference to people’s lives.

Consumers may be involved in any of these tasks in different ways, including as individuals or advisory groups; face-to-face, via social media and remotely. Consumers may also be involved in activities outside individual studies as reviewers, consultants and advisors. Engagement can be flexible and develop over time to suit consumer availability and confidence; and researcher skills, confidence and resources.

Influential people, organisations and resources exist to inform and support consumer engagement. The following, by no means exhaustive points, contain some of the key principles of engaging with consumers.

  • Involve consumers before starting research and as early as possible
  • Dedicated staff is required to support and coordinate consumer engagement. This requires funding.
  • Excellent communication is required – to educate about research, clarify roles and expectations and to sustain strong working relationships. This may include communication about potential frustrations and disappointments.
  • Time must be allowed to engage with consumers – to fully support their involvement
  • Aim to engage with more than one consumer to address potential imbalance, for mutual support and enable ongoing engagement if one or more is unavailable
  • Funding is important to adequately compensate consumers for their input.
  • Identify challenges and consult with consumer to identify solutions. These may include financial considerations, time and availability, education, and flexibility of engagement.
  • Provide feedback on the impact of engagement activities on the research 

An important consideration is motivating researchers to embrace and facilitate engagement – this may require policy- and funding-driven initiatives, publications of the outcomes of consumer engagement, peer modelling, and education.

The second and third main issues I explored were engaging with children and youth with cerebral palsy, and people with communication difficulties. Work is developing in these areas, with excellent models in The Netherlands, UK and Canada. Engaging with children and youth is an exciting area which requires creativity and ingenuity. Partnering with people with communications difficulties is vastly under-explored.

Finally, the fourth area I explored was evaluating the outcomes of consumer engagement. Like consumer engagement itself, evaluation can take many forms from simple and discrete through to complex. Tools and models exist and we, consumers and researchers in partnership, are challenged to evaluate consumer engagement and use responsible means to report what was done, how it was implemented and what we achieved.

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