As HD remains an incurable disease research plays a key role in the lives of those affected by HD and therefore the need for news is naturally insatiable. However how as a layman can you engage with the intricacies of research discourse as well as decipher through at times what can be an overwhelming abundance of information? Also how do we determine what is and is not relevant and how it translates to everyday life? These are key questions that in the Victorian context HV and HRGV have collectively engaged with and are attempting to address with respect to issues of relevance and accessibility to information. The HRGV was established in 2004 and represents a collaboration of scientific and clinical investigators from academic, clinical and research centres that are committed to the cooperative planning and implementation, analysis and reporting of research studies. HV is a member of the HRGV which aims to improve the understanding and treatment of Huntington’s disease and related disorders.
HV and HRGV as separate entities share a commitment to improving the lives of persons affected by HD and as such it was a natural inclination for both bodies to commit to working collaboratively in responding to the community’s need for information in relation to research. HV and HRGV have developed a community engagement strategy that is defined by three key approaches to community engagement – inform, consult, involve. The purpose of this strategy is to establish: A planned annual community engagement activities program (i.e.) Community Day, Information sessions etc. A structure of communication defined by translational research utilizing communication mediums such as newsletter, website and social media. A forum that meets regularly to discuss implications of current and/or new research and mediums by which to best translate information to the community.
- Huntingtons Research Group Victoria