Two years ago, in June 2015, the International Children’s Advisory Network, or iCAN Research, was officially launched at its inaugural annual summit in Washington D.C..
iCAN is a worldwide consortium of Youth Advisory Groups, each advocating for research in pediatric healthcare. When a clinical researcher is developing a pharmaceutical trial, medical device, product, or protocol; as part of their ethics approval, they must consult focus groups such as those within iCAN, and ask for feedback and advice on their proposition.
From 2011 until 2015, I volunteered at one of these groups in the UK:
- presenting in the British Science Festival on healthcare data security,
- contributing to studies such as SEATON and TrialNet,
- and presenting to the Chief Scientist for Health, NHS Scotland for funding.
My work as a Technological Engineer
Since the formation of the overreaching network, I have progressively been giving more of my spare time to iCAN itself. I volunteer now, as a Technological Engineer, working on most technology aspects of the organisation. I manage the marketing website, internal tools (MediaWiki, Slack and G Suite/Google Apps), security, and most recently, after successfully applying for a grant from Google for Nonprofits, the $120,000/year advertising budget.
I am also, personally developing an internal member portal, as well as an external partner portal, for use by pharmaceutical companies and researchers wishing to apply for iCAN’s services.
I attended the first annual summit in Washington D.C., 2015; helped organisation during the 2017, Florida summit, and will again be volunteering with the 2018 summit in Edinburgh.