Thank you to everyone who participated in research from the Monash University School of Social Sciences looking at what patient advocacy looks like in the digital age – the results were recently presented at a workshop in Melbourne.
Researchers identified a number of common reasons for engaging in online health advocacy, including (i) being able to connect with others and share stories, particularly important for those with rare diseases and those in regional and rural communities, and (ii) accessing information about health and illness, particularly if there are difficulties accessing or understanding health professionals. One of the major concerns about engaging in online advocacy, however, related to the security and privacy of health information or details shared online. There were also mixed responses as to whether this method of advocacy/ activism was successful overall in achieving goals such as more awareness from government or more funding for research.
Head to our Research News page to read the full report.