

Ask HN: How to motivate people to help speed up medical discoveries? - Aurametrix

The Problem: There are more medical mysteries than one may think. In order to solve them, we need help of the community, including healthy individuals, we need diagnostic measurements beyond human genome sequencing,<p>The Idea: Use Kickstarter, IndieGoGo, whatever you think would work, to tell about prospective projects and let people make pledges for the amounts of time they could devote, samples they are willing to donate, money to cover cost of reagents, etc<p>We are working with medically underserved populations willing to spend their own money to conduct clinical trials and find reasons for their conditions. We are lacking healthy controls for our diagnostic &#38; observational clinical trials. We do comply with all applicable federal laws, so privacy and confidentiality is guaranteed.<p>Do you think these kind of projects could be crowdfunded? Would there be healthy people willing to pay for diagnostic tests and share the data with the trial researchers (HIPAA protected)? In return, we will analyze their results and place it in the context of other people's data and known biomedical information, make predictions, give early bird access to software, device and so on. Could such a project be Kickstarted? Thanks for your input!
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olefoo
One model I would like to see works as follows:

1\. there is a patent pool to which all participating entities assign their
rights

2\. there is a functional specification for the medical device (e.g. a full-
body imaging scanner that puts dose < x milliroentgens of ionizing radiation
into the subject per scan)

3\. there is a cyclical competition (yearly, quarterly, monthly, whatever is
found to work best) during which multiple cross-disciplinary teams are invited
to submit working prototypes that meet or exceed the functional specification.
The funding entity guarantees that any entry meeting the minimum standards of
the specification will get an order of x thousand units for testing.

4\. The funding entity also gets a non-exclusive license to manufacture the
winning design. (non-exclusive, as in any of the teams are free to
commercialize their own work at their own risk, not freely licensed) Profits
from the sales and licensing of devices would be apportioned based on the use
of technologies licensed from the patent pool.

This model would implement a positive feedback loop in which competition
between teams would not be an obstacle to teams building on each others work.
The main obstacles to this model are legal and political, and radically
improving medical care and medical technology are likely to be popular
actions. The key I think would be to get the FDA (in the US and it's
counterparts in the EU, Japan and elsewhere) to rule on the safety of the
functional requirement and the informed consent of beta testers rather than
post-approval of completed devices.

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Aurametrix
Good model. We can address the regulatory obstacles. We are in the process of
forming an independent international ethics committee - review board
addressing requirements of US, Europe and Australian authorities. Our interest
is in harmless diagnostic analyzers and test kits.

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tomotomo
how about doing trials in countries with lax regulations where people would
love to get paid to try medications they otherwise would never even be able to
afford

