Background and Aims;
In cancer research there is growing interest in consumers and researchers working together in partnership, yet the practicalities of partnering and how to optimise the co-design process have not been well established. A research group of health care professionals and consumers aimed to create a Personalised Care Plan for patients with newly diagnosed locally advanced rectal cancer. The group has reflected on and documented their experience of co-design.
Methods;
Our research group includes consumers from the consumer program at WEHI, multidisciplinary colorectal cancer clinicians, and project officers. Together they created the Personalised Care Plan template, to be provided to patients and their general practitioner. The team’s reflections on the co-design process have been captured using Gibbs’ Reflective Cycle. Patients are currently enrolling into a prospective cohort to evaluate the impact of the Personalised Care Plan.
Results;
In 2022, over six meetings, we created a two-page Personalised Care Plan to embed into the WEHI-CRC database. Personalised information for individual patients includes stage of disease, planned treatment, and scheduled follow up. Reflection on the co-design process highlighted the importance of establishing expectations, having expertise within the consumer group, and open communication and respect. Challenges included time commitment, power dynamics, diversity of representation, and loss of consumers due to health reasons and time availability. Responses reflected a positive attitude-change of the researchers on the value of consumer input. Both consumers and researchers communicated the high objective and affective value of contributing to the project.
Conclusion;
Reflecting on the co-design process for a patient education sheet, we found that essential components of a co-design group are having clear expectations, and strategies to address challenges such as time commitment and entrenched power dynamics. Meaningful input from consumers can objectively improve the outcome of the project while offering positive personal value for consumers and researchers involved.