Challenges:
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.... more »

Work with US News & World Reports to include a measure of data sharing in its rankings of hospitals

engage patients/parents/local foundations to insist that hospitals are participating in data sharing initiatives

Currently the NCI's specimen resource locator website seems to be underused as a means for helping researchers identify which labs and institutions have certain biospecimen collections. The NCI could require that all biospecimen and more expansively, cancer data collections that were funded by public funding through the NIH be reported to this website as a means of helping all researchers know where the data is and who... more »

Proposals submitted to the NIH often require a Resource Sharing Plan document, and those proposing more than $500k in annual direct costs often require a Data Sharing Plan. These documents are not made public, making it onerous for investigators to understand what commitments have been made to the NIH as a condition of funding.

For a use case, imagine a scenario where the reader of a manuscript identifies a described... more »

Facilitating interoperability across various data repositories as well as novel and harmonized data analytic tools that can be used across different systems: Many hematologic diseases, including those that impact the pediatric population are categorized as rare diseases. The rare, yet deleterious nature of these diseases (e.g., chronic myelomonocytic leukemia) make it challenging to build a critical mass of data, that... more »

To further encourage sharing, the resource sharing plans submitted to the NIH should be reviewed for overall impact. NIH should also consider scoring them individually.

To maintain participant-centric research, studies should always provide participants, guardians, and their respective point-of-care physicians with all relevant data, research findings, and recommendations. Funding institutions should move towards operationalizing data sharing by implementing robust policies. These policies should be supplemented by a roadmap of priorities and investments that incentivize researchers... more »

As a scientist and patient's parent, I believe strongly in data sharing to help others, IF the data is de-identified and privacy is secure. Comments by a CCDI speaker, that suggest it is unethical for patients and parents to think that they should have some right to privacy and a choice to or not to share data, are extremely harmful to science and medicine, and it is a deeply troubling movement. On a related counter-point,... more »

The Cancer Imaging Archive (TCIA) is an NCI-supported data repository for hosting de-identified publicly accessible cancer imaging data and clinical information from studies and trials. Over the past 10 years TCIA has become a valuable public resource to the broader imaging research community. Although TCIA currently holds over 100 collections derived from major research initiative, it has limited existing childhood... more »

The Cancer Imaging Archive (TCIA) is an NCI-supported data repository for hosting de-identified publicly accessible cancer imaging data and clinical information from studies and trials. Over the past 10 years TCIA has become a valuable public resource to the broader imaging research community. Although TCIA currently holds over 100 collections derived from major research initiative, it has limited existing childhood... more »