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If you want better health research, involve consumers

For years, health research has been the domain of health professionals and academics, with little involvement from consumers. Consumers have typically been called in at the end, when the results have been analysed and the outcomes discussed and reported on.  

The process is flawed: Research is based on assumed need and expected outcomes. 

Those working to improve healthcare outcomes have recognised the need to make healthcare research relevant to the community. There’s now a significant shift to embed consumers into healthcare research throughout all phases of the research process. Perhaps most importantly there is a move to involve patients and consumers in the development of the research question from the start. 

The Musculoskeletal Health Clinical Academic Group (MSK Health CAG) at Maridulu Budyari Gumal is spearheading this shift. Their aim is clear: to ensure consumer and community involvement in all stages of musculoskeltal research. 

Speaking on behalf of the MSK Health CAG, its Lead, Geraldine Hassett, emphasised the importance of recognising consumers as the end users of healthcare. “If we are to deliver appropriate health care services we need to ensure that we are doing research that is relevant”she says. 

Creating a Consumer Community Council

To ensure that genuine consumer engagement was possible within the MSK CAG, a Consumer Community Council (CCC) was established. The role of the CCC was to act as an advisory group for those conducting research. The CCC was able to communicate directly with the researchers on individual projects to give them the perspective of the consumer. 

The Council is convened by Carol Vleeskens. Carol has a wide range of community participation and engagement experiences, with a rich background in a broad range of health services. 

“It’s really about looking at how research can be done in a way that’s inclusive and ensures that everybody, all stakeholders, have a say in what needs to happen” says Carol.

Better informed research for better health outcomes

To design incisive research, researchers need know what people are talking about, as well as what myths are out there in the public domain. The only way to know this is to involve consumers. It’s a model that will lead to better-informed research that has meaningful outcomes.

Whether it’s a media campaign designed to improve back pain, or the ethics behind using research protocols, ensuring a consumer perspective is salient. Involving consumers who have a lived experience of what’s being studied ensures the research can be relevant to the community. 

Everything needs to come back to what’s important and that’s improving patient outcomes. This is something the group will ensure through their work.   

As Geraldine shares, “It’s something I’m passionate about. Working alongside consumers to improve patient outcomes at the point of care.” 

Adapting research to cultures

Having a culturally and linguistically diverse group of consumers within the Council is important. This is especially important in Sydney, whose ethnically diverse population should be represented across all health research. After all, findings and research that are appropriate for one group may not be for another. 

Helping everyone talk the same language

Healthcare research is a specialised area which can be difficult to interpret for the lay person with no research background. To ensure that genuine consumer engagement is possible, it is necessary to use appropriate language so that the researcher and the consumer can to talk to each other.

Part of the Musculoskeletal group’s work involves developing tools that enable effective communication between researchers and consumers. Having these tools makes it easier for consumers to give useful feedback on specific research projects. 

As Carol says, “It’s not  just about us giving input, it's about using our networks to open doors for other researchers to have their own relevant networks in the community.” 

The value of different perspectives

The greatest benefit of connecting researchers with consumers is informed healthcare research for the benefit of the community.

The consumers perspective brings a richness to the research that is hard to quantify. We all want to ensure that the research which is undertaken will one day have a real  impact on the lives of the patient and the community.  Genuine consumer engagement in research is a vital part of achieving this goal.

“We’re seeing how it all fits together, so it’s just an excellent synergy,” says Carol. “Our aim is to champion brilliance in this space,” she concludes.  

Maridulu Budyari Gumal intends to use this consumer engagement model across all its Clinical Academic Groups to ensure consumers are embedded in health research across Sydney.  

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