I’m sharing this post I wrote that first appeared last week on Rare Disease Report (1) in case any of my readers haven’t already seen it, and (2) to provide some additional commentary and space to discuss in the comments below. As rare and undiagnosed diseases continue to be a focus of innovative medical research (such as the naming of the six medical centers joining the NIH in the Undiagnosed Diseases Network), more sponsors, facilities, and clinicians will be faced with the opportunity to embrace the positive effects of social media on their clinical research and the urgency to mitigate the negative ones.
Obviously, I have a very personal perspective from our experience about those in clinical trials utilizing social media and the impact it can have. Within the next few weeks, I will follow up this post with an open letter regarding the use of social media by clinical trial participants.
Feel free to comment below with your thoughts and I will address additional issues we discuss in the follow-up post.
It’s an understatement to say that social media has had an impact on almost every aspect of rare disease, as well as many common diseases. From patients being able to find each other quickly, to their ability to promote fundraising and advocacy campaigns, social media has opened doors that previously did not exist.
For pharmaceutical companies, social media offers a unique opportunity to listen and understand patient communities, but it also causes trepidation in some circles with respect to how it impacts their clinical development programs. Read more….