The WEHI Consumer Program (The Program) was established in 2013 to enhance the institute’s medical research by partnering consumers with lab scientists to develop, undertake and share research.
Until now, there has been no formal evaluation of The Program.
Supported by MACH, the WEHI Consumer Program Evaluation – previously named the WEHI Consumer Buddy Program Evaluation – worked to identify potential areas of improvement within The Program as well as best practices in Consumer and Community involvement (CCI) that can be applied across the health and medical research sector.
Study lead and consumer advocate Robyn Smith says The Program is unique because it is well established, available across the entire organisation and involves consumers early in the research cycle.
“Consumer involvement is becoming more common in health services and clinical research, but it’s unusual to have such a big program for laboratory-based research.”
Led by Ms Smith, the Evaluation was conducted in collaboration with a steering committee of consumers and scientists from The Program as well as Australian Health Research Network members with an interest in consumer involvement.
“I worked with the committee to develop the project methodology, and we had active consumer involvement all the way through,” explained Ms Smith.
The evaluation included interviews and surveys with people across WEHI – exploring The Program’s experiences, strengths, success factors, improvement opportunities, outputs and perceived outcomes.
“To gain a broader perspective, we also interviewed senior WEHI leaders and former WEHI Consumer Program participants.”
Benefitting research and the community
Ms Smith says participants, particularly scientists, are gaining a lot from The Program overall.
“It’s important for scientists to have the person their research may benefit working alongside them to provide insights of lived experience.”
These insights are helping WEHI in many ways: from setting research priorities to developing grant applications that are practical, feasible and easy to understand.
While many WEHI researchers have clinical backgrounds, Ms Smith says lab-based scientists reported benefitting from the chance to work with people living with a health condition.
“Understanding what it’s like to have survived cancer or have a condition like Parkinson’s disease is something that’s quite rare for many scientists.
“Some scientists reported they were not used to talking to people in those situations, so that’s where support and training is important.”
Ms Smith says that several scientists likened their consumer partnerships to having “their own personal cheer squad”.
“Having someone who encourages them to do their research, values their work and wants to contribute was a motivating factor.”
With discovery-based science often taking many years to translate to the clinic, Ms Smith emphasised that scientists being able to manage expectations for consumers was important.
For many consumer participants, participating in The Program gave them the personal satisfaction of giving back to science and helping improve things for the next generation.
One consumer survey participant said:
“Consumer involvement in medical research is important to me in the hope someone else’s health journey might be improved by mine – with the knowledge and experience I can share with researchers who are paving the way for a brighter medical future with improved outcomes for patients. That’s what it is all about.”
Short Guide for Medical Research Institutes
Ms Smith drew on the Evaluation’s findings to produce Increasing Consumer and Community Involvement in Medical Research: A Short Guide for Medical Research Institutes.
“There’s a lot of information out there for clinical and health services research, but not so much for basic research,” she says.
The Guide is designed to give the fundamentals of involving consumers in laboratory-based, discovery and basic research, and link readers to existing resources for further information.
Ms Smith says that, by embedding a CCI program in an organisation, it becomes part of everyday practice.
“And it constantly brings accountability back to what’s important to research and what’s valuable to those experiencing a particular condition and the wider community.”
NHMRC consultation on national guidelines
The National Health and Medical Research Council (NHMRC) is currently revising its Statement on Consumer and Community Involvement, which supports CCI across health and medical research to improve the health and well-being of Australians.
If you would like to be involved in the consultation process, please visit the NHMRC website.