This is the text of my *humble cough* winning Dangerous Ideas Soapbox presentation at yesterday’s SAPC conference. Not entirely sure how much of this I got in during the 2 minute (and strictly adhered to) time slot, but this is what I intended to cover!
Kickstarter is a crowdfunding platform. You don’t have a product which people click on and you sell – you ask for investment up front and if you don’t get enough promised custom then your product does not get made. You have to make a pitch, you have to promise what will happen, convince people to invest in you, you have to do this within a time limit. What if, after passing peer review, rather than being given the funds for your research, you had to make a pitch on a platform like this for patients to commit to your project and only if you get enough support would the funds be released? Patients after all, as taxpayers, are paying for this research and this would give them an explicit vote with their cash.
This is actually very consistent with current policy and with the current philosophy funders claim to have. A patient driven research agenda, research that reflects patient priorities, research that engages patients. So let’s put our money where our mouth is and give patients the purse strings.
Yet, despite it being a natural evolution of our claimed approach, most people I’ve mentioned to have thought this was crazy or it sent them into palpitations – and that’s why this is a dangerous idea because this provokes some difficult thinking. This is about forcing us to ask whether we really want patient-driven research – do we not trust them with the money? Do we not trust the public to know what research is needed? or do we not trust ourselves to communicate to the public what research is needed and justify why our studies should go ahead?
Also, it is scary, there are risks. If you don’t do a convincing pitch, if you don’t get patient backing, you don’t get the funds. But there’s a motto that’s used in silicon valley that I think is apt here – Fail Faster. Maybe if you can’t drum up support in advance, you need to stop and reconsider. Think about the 45% of publicly funded trials which fail to meet recruitment targets once they’re up, running, and spending public money.
And maybe patient supportd research would help with those problems of recruitment and retention – think of platforms run by and with patients, such as Patients like me. Patients choose what they want to research, and the site has 250,000 ‘data donors’ engaged and participating in studies – how many trials can claim the same?
This model would not only bring to life the idea of ‘patient driven research’, it could herald a new way of working with patients, for patients, with their commitment to help us see research through.