Ideas In Development
Our current focus is on developing (what is now) up to five different ways in which participants can ethically fund research. These are:
The Matching Agency
Matching neglected research with a wealthy patient aka The Plutocratic Proposal
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De Novo Research
As suggested by Oxford Genomics (see article), ie where a rich participant pays for the design of a new small molecule to target a given biochemical pathway). (This project is in late stage development
The Plutocratic Proposal (Lanciano variation)
Larger, later phase comparison studies (ie trials) which you participate in, yet you can still be sure not to end up on the placebo wing. We still have to argue the ethics of this one, but it’s not too different an approach to the ethical argument for The Matching Agency project – see above.
Large, Late Phase Trials in which all participants pay a nominal sum.
We’re writing a paper about this at the moment with the Oxford musculoskeletal group. Essentially, crowdfunding with an extra reward for £10, ie participation
Patient Powered Research
… in which patients help to develop and guide research.
So, for example, a mechanism by which patients can report symptoms and so provide their own data for clinical research (rather than having to go into hospital to have it done) would fall under this area.
So would an investigation into what patients (as opposed to academics or institutional ethics boards) consider to be the most important ethical concerns in a clinical study.
Another example might be patients working on ways to improve recruitment and retention in trials (so much research fails because of poor engagement).
In summary: Anything which helps patients to exercise meaningful influence over clinical research.
Ethics
Our work so far has been focused narrowly on funding clinical research, but a significant reason we’ve had success is because we’ve proved that ethicists have been wrong to dismiss a certain type of funding model — so ethics is included.
One of the biggest ethical concerns that we’re addressing in the next paper is participation. So recruitment and retention on trials is also part of our work.
Type 1 Diabetes
One of the other hypothetical trials we want to consider for inclusion in the paper Alexander Masters is currently writing is for Type 1 Diabetes, with patients sending in their own data.