An evaluation of Diagnosis Day found that the storytelling project had high engagement, and that people who shared their stories felt respected and supported.
Diagnosis Day was a collaboration between Melbourne Genomics and the Genetic Support Network of Victoria (GSNV). The seven-episode series followed Australian families with rare genetic conditions, as they sought answers and found community.
Diagnosis Day was evaluated by skilled evaluators who were not directly involved with the project. They interviewed collaborators, surveyed participants and project advisors, and reviewed reach and engagement data for the three-month period after the series premiered.
Diagnosis Day had more than 79,166 views on LinkedIn and YouTube, with an average engagement rate of 5% (considered great for LinkedIn). It has been viewed in several countries and used as educational content for clinicians and university students.
The people who shared their stories said they felt respected, valued and supported through the process, and most felt they had control over how their story was told.
The evaluation is full of valuable insights for communicators and advocates. These range from working collaboratively (‘Co-define your objectives and revisit them regularly’) to recruiting participants (‘Don’t rely on usual channels to find diverse participants’), participant experience (‘Use a robust screening and consent process’) and distribution (‘Invite people to create their own posts with your content’).
Melbourne Genomics and GSNV are grateful to everyone who brought Diagnosis Day to life. We hope this evaluation will inform future storytelling projects in the genetic and rare disease sector.