End user involvement improves disability research

Involving people living with a disability directly in disability research improves the relevance of research results, a recent study has shown

The literature review, conducted by Monash University researchers, Professor Brian Oldenburg and Nerida Joss, on behalf of ISCRR, reviewed existing evidence on the costs and benefits of involving end-users in the research process.   

Ms Joss said that across the literature end-users were considered experts about their health issues and healthcare needs.

"Their involvement improves the relevance of the research by helping the researchers understand the health issues from the perspective of the end-user. Involvement also empowers the end-user," Ms Joss said. 

ISCRR Neurotrauma Program Lead, Verna Smith said that involving end-users in research, health service development and policy has been widely recognised as effective across a variety of disciplines.

"Despite this fact, end-users have not been widely involved in disability and rehabilitation research," Ms Smith said.

"This is generally in anticipation of obstacles and increased costs. Although this recent literature review indicates end-user involvement is beneficial to research, there is not enough high quality evidence on this topic to be able to reliably determine its impact."

"This is a good case to support undertaking new research which actively explores the benefits and costs of user engagement."

Ms Smith said that a high level of engagement with the Transport Accident Commission's clients was central to ISCRR's neurotrauma research program.
"This engagement involves much more than seeking participation of clients as subjects or sources of data and facilitates the identification of the key research questions and the delivery of applied research to meet the objectives of the program," Ms Smith said.

Click here to view a summary of the snapshot review: Costs and Benefits of end-user engagement in disability research.