Using social media to improve awareness of clinical trials in rare lymphomas
Slowly but surely, we are seeing more use of social media in one area where I really think it can help a lot – clinical trials.
Regular readers will know of my passion for use of biomarkers in studies to ensure that the patients most likely to respond and therefore benefit will get treatment, thereby sparing those unlikely to respond of the debilitating systemic side effects. This also helps to reduce false hope and raise more realistic expectations.
I was therefore delighted to see a new video from the folks at MD Anderson Cancer Center where Dr Anas Younes, a lymphoma expert, is explaining about the new trials they have open in a rare form of lymphoma, Peripheral T-Cell Lymphoma (PTCL), with some new agents in development.
The groups stated mission is abundantly clear and admirable:
“Our mission is to improve the cure rate of patients with PTCL and reduce treatment-related toxicity by developing novel targeted therapy using rationally designed small molecules, antibodies and combination regimens of biologic agents.”
Check out the short video below – if you can’t see it, you can click this link to take you directly to it:
http://youtu.be/UTCBWQtk65s
PTCL is very rare indeed, but…
- It is good to see companies invest in clinical trials to continue to improve outcomes
- Social media sharing through YouTube, Facebook, Twitter and blogs is a great way to aid awareness of clinical trials for those are suffering
- More awareness will hopefully lead to faster enrolment and earlier readouts that can be publicly shared with all
- Dr Younes is a fellow believer in targeted agents in a targeted fashion based on the underlying biology of the disease. Love this – using targeted agents in an untargeted fashion is both silly and a waste of time/research dollars
- Academia is probably the ideal way to provide this sort of education – are you more likely to believe or be persuaded by a passionate medical specialist from a top cancer center or a pharma company advertising clinical trials?
There has been some excellent research from Pew Internet recently that showed, as Susannah Fox summarised for me via Twitter:
“Most patients say professionals are more helpful than peers for diagnosis, Rx, treatments.”
She has also published another in-depth report that looked at Peer-To-Peer healthcare. I particularly liked the aims:
“This report shows how people’s networks are expanding to include online peers, particularly in the crucible of rare disease.”
Those online peers could be connections from all walks of life, who like me, like to share fascinating stuff from reputable sources such as Pew Internet, Manhattan Research and top cancer centers such as MD Anderson. The beauty of social media is that we can all share information and help improve medical education and awareness across a broad church. As Thomas Friedman said, the world is indeed getting flatter.
For those of you who know someone who has been diagnosed with PTCL or other rare lymphomas and is in need of treatment, do share Dr Younes’ video with them – they may be able to help.
