Last December, this study showing that participation in oncology trials is basically abysmal made national headlines and helped create an interesting news juxtaposition – on one hand, a cancer moonshot is in the works, on the other, less than one in five patients today participates in vital, available research.
Enter Twitter, stage right. In an effort to identify possible novel approaches to improve recruitment results for not just cancer trials but all types of medical research, social media started to garner interest on the heels of those headlines. I personally found this suggestion both interesting and puzzling.
I am a Twitter user – and mother to an 8-year-old son with cancer who is currently enrolled in his third clinical trial (he’s doing great, btw). Prior to reading the Medscape piece, I would have never thought twice about Twitter as a source of vital medical information. For me, Twitter is a way to quickly catch up on current events happening locally, politically and around the pediatric cancer community.
So what is my opinion on Twitter as a trial recruitment source? Meh. First of all, consider who uses Twitter – according to Pew Research Center about 23% of all adult internet users, and a fifth of the entire adult population, uses Twitter. In the US, there are about 65 million Twitter users; usage is highest among urban residents, adults under 50 and people in upper-income brackets. Impressive certainly since the network is only ten years old, but how does its core demographic map to the types of patients that could benefit from a clinical trial?
I am not a scientist nor mathematician so I cannot answer my own question beyond the obvious – a lot of opportunity to reach patients, but what does that really mean because the medium is not the message. There is how to get the right trial opportunity in front of the right patient… and then how to spur action.
The context to social media usage as one experiences medical challenges is extremely nuanced. I belong to a community of cancer moms that will embrace social media for access to support via other families and communal knowledge, and will as quickly put it down when reality – that of others including full heads of hair and easily reached milestones – is emotionally too much.
So clearly I believe social media has a place in disseminating useful information but for Twitter or any social media channel to help with clinical trial recruitment, there is much work to be done. Where to start? How about by re-branding the term which far too many associate with “experimental medicine” or worse yet, “beyond help.” After all, what would you rather sign up for, a trial or an opportunity? If someone were to describe your personality as “clinical,” would that please you? When I tell people that my son is on a clinical trial, I often get a sad face – and yet I wholly credit our decision for his amazing progress.
All this to simply say, it’s fabulous that there is open dialogue about how to expand access to new treatment options for patients that could benefit by way of improved outcomes, less invasive therapies and more manageable side effects. Social media has a role, but it’s no silver bullet, particularly the sound byte laden Twitter. In fact, using Twitter as a lever in trial recruitment sounds like an interesting research study in and of itself to identify the most engaging sources and responsive populations. Hmmm now how to start recruiting?
About the author: When she is not working as a healthcare marketing and PR professional, Jennifer Crowley is mom to an eight year old son with cancer. His illness has largely driven her interests in patient advocacy, pediatric cancer research and personalized medicine. It's great to learn because knowledge is power!