Get the FDA out of the cancer research process.
Enhanced Data Sharing
Cancer Research Ideas - Enhanced Data Sharing (Archived)
Sharing data among investigators and institutions is essential for building on the cancer research progress made so far, but many barriers to effective sharing exist. Barriers can arise from technological or infrastructural limitations (data are stored on different systems or are generated by different methods, making them incompatible). Poor access or participation can also be a barrier (some data may not be shared, and some researchers may not be able to access or analyze even data that are publicly available).
The submission period for Enhanced Data Sharing ideas ended on July 1. However, we encourage you to sign up for regular e-mail updates about the National Cancer Moonshot Initiative at the Cancer Moonshot Milestones web page.
Develop intelligent "Research Assisting" technologies using MEDLINE to extend Researcher reach of awareness across silos of data and expand the grasp of comprehension across SME areas of expertise using Literature Discovery and Hypothesis algorithms.
Many of the posts here discuss the same kinds of problems, and nearly all of these issues are already being addressed by the pilot program of CBTTC.org. They've built an open access infrastructure that will support both data sharing and research.
Health plans have a significant amount of data that could be helpful to researchers. However, freeing the data is not as easy as we might think due to regulatory/accreditation and legal issues such as HIPPA violations and fines.
Enhanced data sharing can create scientific opportunities, leading to new knowledge and discovery. NCI can work towards this important goal by facilitating data sharing and addressing barriers that limit the utility of shared datasets.
Recommendations for training and quality assurance need to be built into the Cancer Moonshot. The International Cell Line Authentication Committee (ICLAC) has detailed recommendations on this topic. See: http://iclac.org/cancer-moonshot/
There is no easy way for cancer researchers to find out what clinical or biological data exists that is relevant to their research question. We envision a website that connects scientists with researchers who previously collected relevant data.
Expand PACS to allow federated data analyses, annotation and cross-linking of image subvolumes to create queryable, high-value resource for research, computer vision algorithms, and ultimately for better diagnosis, clinical treatment decisions.
An app on patient's mobile devices would make it simpler for them to share their medical history - both with medical personnel who treat them and with researchers.
Mental and physical support for patients and their family prior to and after surgery and even more important prior to and after chemo-radio therapy. A lot never recuperate and there is no training to understand and support AND PHYSICIAN AND PATIENTS
Implementation of the American Society of Clinical Oncology HL7 Clinical Oncology Treatment Plan, Summary, and Survivorship Care Plan in Cancer Center and Primary Care Electronic Health Records to support coordination of care.
Medical record data should be linked to databases such that the time between data generation, data entry, data review, and data summarization is dramatically reduced.
My idea of data sharing should be patient or care giver focused, which includes: (1) easy to look for second opinions (2) empowering patients/care givers to understand treatment options through supporting 'virtual' doctors.
Radiation therapy quality may vary based upon the parameters used to design, assess & implement treatment. Developing an online platform provides academic & community radiation oncologists to crowdsource best practices to lessen disparities.
Combination therapy testing needs an overhaul and boost. There may not be one “magic bullet” for all cancers, but there will be combination therapies answers for many kinds of cancer. These need large-scale exploration and cross-study coordination.