At the suggestion of Bob Dawson I thought I would throw this out there. Having lived in Academia, BioTech and Industry (Google or youtube- Stephen Friend) I have come to the conclusion that the lack of sharing data and ideas among scientists and the lack of engaging patients as partners and the lack of engaging their knowledge is the most problematic aspect of our inefficient medical research today. To build better representations of disease that couls support new therapies we need to act in more sustainable and sharing ways.

We at the non-profit Sage Bionetworks have been working with many patient communities. Many of these are now starting up well in cancer and diabetes.. You can google Sage and Congress to see what we are doing in April.

I want to help patients realize that unless they demand more sharing and open exchange of data that the work will not proceed efficiently. I was sad last year when we approached at well known Parkinson's Foundation with the idea of collecting the narratives and questions directly from patients and wanted to allow the patients to frame the questions they wanted the scientists to answer. I was told that they already have the top scientific experts so they know what should be worked on and that our idea of having patients chose where their funds went- including supporting the genomic analysis of other patients with Parkinson's was naive and non-productive. If you feel otherwise please tell me somehow and we will help. We need activists