There needs to be standardization of data reporting and sharing across institutions.
Patients need their data accessible and available to share at will.
One portal available by all researchers - such as cBio - where individuals could ensure that their redacted data was uploaded into
Data needs to live in treating institution as well as made available for all researchers with an interest in a given area. This is essential particularly for rare cancers where data is in disparate institutions.
Some institutions will not share tumor/genomic data even with patient. A standard NIH form would be helpful at a minimum.
Advocacy organizations can be helpful in activating a disease community to share data - in fact we have been doing this already. Patient families are very willing to help inform research.
We have also developed a guide for families and physicians to know where to send bio samples based on patient goal (inform treatment, research or self on drivers).