Consumer article: Consumer co-researchers making a difference: and a call to action for occupational therapists
New findings following a study on consumer involvement in occupational therapy health-related research have revealed that comprehensive consumer-researcher partnerships may not be common-place in occupational therapy research in Australia.
The research team from Griffith University, QE11 and PA Hospitals included three academic researchers and two consumer co-researchers. One of the consumers, Elizabeth Miller, is a member of the HCQ Consumer Network, and the other is Bernadette Tanner. Together with the research team, they reviewed the current status of consumer engagement in occupational therapy health-related research which was published in the Australian Occupational Therapy Journal over the past 5 ½ years.
Of the 123 eligible papers, 48 included various types of consumer engagement, but only two involved consumers collaboratively, or in-depth, across all the research phases of preparation, execution and translation.
Four themes which demonstrate the key philosophies of enabling and empowering consumers and communities in research emerged from this scoping review –
- Parity is essential 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
- We must meet the challenge of being diverse and inclusive
Consumer involvement in research is becoming an ethical, political and moral imperative, and this study verified that collaboration with two consumer co-researchers in finalising data analysis, interpreting results and reporting outcomes added a diverse and valuable perspective. It also highlighted the need for training and development of both health researchers and consumers in order to build capability to create meaningful partnerships.
Elizabeth said, “Taking part in this research process over the past year has been a rewarding, stretching and fulfilling experience, and I would strongly encourage other consumers to become engaged in research, if and when the opportunity arises. I’ve enjoyed the genuine co-learning that’s taken place, with our research team being committed to an authentic partnership. It was also exciting that our paper was accepted for publication.
Along with the learning we’ve had lots of fun and laughter together, and I’m now looking forward to the next exciting phase of our research … watch this space!”