Clinical research online v2.0
Big pharma, FDA etc. have started “channels”
Not used specifically for patient recruitment… yet…
Detour: Twitter 101
Rapid communication within 140 characters
Chronological stream of “tweets” from people you “follow”
Accessible via web, mobile phones etc.
“Retweet” others’ interesting messages to your followers
Suggest who your followers might also want to follow (eg
“Check out @crfocus for news & insights about
Auto-shortened links to websites (eg, http://bit.ly/aUJt4s)
Hashtags (eg, #clinicalresearch) to aggregate tweets by
multiple users on same topic
(Unofficial) database at www.hashtags.org
What are you trying to achieve?
Awareness (condition, potential therapies, study(ies)
Patients supporting each other
Participant support (compliance & retention)
The medium is the message
Provide the tools for individuals to communicate
Enable individuals to connect with each other
Friends & family in “real life”
Based on shared interest (or condition)
It’s about the relationships
Whose advice would someone listen to on their condition
or joining a clinical trial?
Indirect demographic targeting
Where on the web would someone go related to the
• Popular condition-specific blog
• Is there a Twitter hashtag? (If not, maybe start one?)
Where else would someone of that age/gender/lifestyle
Get involved, add value
Expert comments on blogs
Become part of the community
The medium is the mash-up
Open standards on data structures (XML)
Combine & analyse shared data from multiple sources
“Widgets” to spread community & content via own
Websites providing automated suggestions
Based on internal & external databases
• GoogleHealth, Microsoft eVault, Electronic Patient Record
• ClinicalTrials.gov, EudraCT?
eg, Online health record + ClinicalTrials.gov + location
One example: TrialX
Community tools/forums, plus “experts” and investigators
Start of “smart matching”
Downsides & dilemmas
What will people be prepared to share?
Semi-closed communities might encourage people to open
Pharma-driven communities might provoke more
Good news travels fast, bad news travels faster
… but this will happen whether you’re there or not!
Specifics of permission & use of data
Ethics approval for material circulated “virally”
Loss of control of information & “message”
Risk of unblinding if patients “compare notes”
Can a tweet be an SUSAR report?
“And”, not “or”
Social media should not displace traditional media in
Social media has relatively low direct conversion rate,
but effective in promoting authority & engagement
Monitoring traffic can be onerous, but it’s necessary
Just because you’re not looking, doesn’t mean they stop
talking about you!
Requires sophisticated per-study blend of techniques
Put the right tools in the right place, then let the net
Experiment “socially” before you do it at work
Editor, Clinical Research focus
Workshop: Questions for discussion
What types of study (eg, phase, therapeutic area etc.)
would be more or less effectively addressed using social
How might you change the mix of old/new/social media
based on a target study population?
What could be done to prevent patients working out
they’re on the same study & potentially unblinding
Will data protection legislation & culture make Europe a
laggard in this area?
What information constitutes “publication” of an SUSAR
by a patient? What implication might publication on
Twitter or a blog have for regulatory reporting