Enhanced Data Sharing

Web-based Oncologic Data and Literature Review Resource

Oncologic literature should be organized, reviewed, and rated through a web-based application, making important emerging data more widely available and impactful. A rating system would help clinicians prioritize data consumption and implementation.

How will your solution make a difference

The breadth of established and emerging oncologic data remains overwhelming to many clinicians. A central, approachable resource with reliable reviews of oncologic practice/innovations could aid clinicians in vastly improving cancer care worldwide.

What is your proposed solution

A nonprofit website/database and associated mobile application will be developed to raise awareness of and rank (in multiple domains) emerging manuscripts/data as to their import to the field of oncology. At least three separate rankings will be maintained – one from invited experts/editors; another from registered users/verified oncologists; another from patients. Accessibility, interactivity, and ease of use will be prioritized.

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Use precision diagnostics to cross refer patients to best trials

Diagnostics tools are effective ways to identify patients for particular therapies. Unfortunately patients who are screened for a particular trial should be provided information on all trials which they may be eligable for.

How will your solution make a difference

Patients will be matched with a trial which is best for them more quickly thereby possibly avoiding unnecessary treatments such as chemo or wasting valuable time on treatments not likely to work. It will help them make informed treatment decisions..

What is your proposed solution

Learn from biotech companies such as Ignyta who are successfully using their Diagnostic platform to identify patients with certain oncodrivers (rare) to enroll patients on their trials. If the patient can be referred to other trials, they do it through the physician. Convene an expert panel to identify mechanisms for rapid data sharing with the patient (upon consent) so they may be cross referred to a trial which may be best for them.

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Making User Friendly Data Mining Tools and Promoting Use

Improving tools to store and mine data is imperative to continue progress.

There is an unmet need for a universal database to access data and query tools.

How will your solution make a difference

A user-friendly resource that combines and directs the user to the data and tools would speed up progress. There are many storage and query tools available that I am not aware of. More to come! We need a grand resource in one place!

What is your proposed solution

Advanced data mining tools are needed.
Many tools are hosted independently such as Oncomine, cBioPortal, transposable element tools etc. and do different things.
We need a resource that catalogs and directs all of the storage and query tools - ex: cancer-scientist.org, LINCS canvas browser, Genomic Data Commons etc..

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Funding and Cultivating a Data Sharing Ethos

Funding for data sharing is small when compared to the overall funding budget and considering its necessity and impact to cancer care.The little funding that is rewarded has not led to extensibility for real world use and expertise gaps still remain.

How will your solution make a difference

The lapses in interoperability is a reflection of gaps in funding and lack of "hybrid" level expertise who understand and roadmap solutions.Envisioning and architecting a pipeline of human capital with incentives with cultivate a data sharing ethos

What is your proposed solution

The data sharing ethos should be composed of teams with "hybrids" who span a broad depth of expertise (medical and data science), and most important have communicative and open pipelines for dialogue.A culture of bringing up the next generation of folks with this medical and data science mindset will help drive future development.The share of funding should be proportionally increased to democratize great minds to be discovered rather than sought

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Advancing patient-valued care through data sharing

To ensure that patients and clinicians are able to make fully informed decisions about pharmaceutical agents, biological products, and medical devices tested through clinical trial research, an era of open science through data sharing is necessary.

How will your solution make a difference

As study populations increase to millions, the implementation of observational studies with novel statistical methods will allow for the discovery of useful, reproducible patterns and relationships from these data.

What is your proposed solution

Scientists, physicians, and the public will mandate that all the primary data be made public, along with the analytical tools necessary to reanalyze, test, refine, and build on them. Data security will have to evolve and thereby win the public’s trust with new techniques that will do what now seems impossible: guarantee privacy protection while providing detailed information about each person.

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Cloud based imaging for oncology

We propose usage of our cloud-based deep learning platform to aggregate images from around the globe and then automate and standardize segmentation and measurement of these images

How will your solution make a difference

We aggregate imaging data and learn from it, then automate accurate and repeatable segmentation and measurement. Advanced imaging will be more widely available as we provide access to powerful computation and automated, accurate measurements

What is your proposed solution

Combining deep learning with cloud computing allows for larger images and more advanced analysis from data collected from sources worldwide. We leverage AI to automatically segment, categorize and measure anatomy and physiology. We’ve proven this with our 4D flow application, and we’re building modules to identify and track cancerous lesions, thus reducing tedious reconstruction, post-processing and contour creation.

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Make data management plans versioned, machine actionable, public

Before we know what data to share and how, we have to know what has already been generated or is in the process of being so. Data management plans help with that, but they would be more effective if they were versioned, machine actionable and public.

How will your solution make a difference

Research would become more collaborative, reproducible and sustainable:
- data reusers could start working while data are still being gathered;
- some data are never published; with their DMPs public, we would at least know they exist and who to ask…

What is your proposed solution

Share data management plans (DMPs), which are documents that lay out planned research.
Make them
- updatable, so as to more closely reflect ongoing research;
- machine actionable, so as to provide a basis for integrating them into automated tools and workflows, e.g. to notify data repositories or potential reusers;
- public, so as to help people find out about each other's work and to initiate reuse or collaboration earlier in the research cycle.

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Presentation of patient status for learning health in oncology

Modern presentation of patient condition including physician impression and patient reported measures will both quantify and communicate patient status between care providers supporting records for data driven decision support.

How will your solution make a difference

Physicians will be more efficient at documenting patient condition and communicating through graphical means while also growing big data for inclusion in learning health systems for improved clinical decision making and future data science research.

What is your proposed solution

Modern human computer interface technologies tailored to oncology bring unobtrusive measures of patient condition and quality of life with high longitudinal resolution in and out of the clinical setting. Graphical presentation of the patient status within existing imaging and treatment related views can communicate, quantify and record the information that physician’s actually use when making treatment and symptom management decisions.

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Allow patients to own their own specimens

Acknowledge patients are owners of their own bodily specimens, allow them to access those specimens as needed for testing and diagnosis, and let them decide with whom to share their specimens

How will your solution make a difference

More patients will be willing to participate in trials because they will have access to their tissues when needed to testing to pursue an FDA-approved treatment or clinical trial, or change clinical trials when a treatment is no longer working.

What is your proposed solution

Revise the common rule to acknowledge that patients own their own specimens. Allow patients to decide who will have access to their specimens (especially rare disease tissues) for research purposes. Acknowledge that patients are entitled to learn results of genomic or other testing conducted on their tissues -- the results could have present or future health implications for them or their families.

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Restructure research system to emphasize open source data

To accelerate cancer research, we need to break down data silos and permit open access to data. Instead of rewarding researchers for being first to gather AND report on data, reward them for generating high-quality data, as well as analyzing data

How will your solution make a difference

Researchers can still pursue studies of interest, but valuable data will be shared with all, not locked away in silos. Shared data accelerates research and enables innovation.

What is your proposed solution

Restructure approach to research advancement. Funders require all research data be placed in open sourced databases. Researchers achieve recognition by (1) creating high-quality data, (2) analyzing data accurately, (3) verifying analysis done by others. All reports are open sourced online for critique. Journals could make money like media does now--by building reputation for accuracy and competing to report on most useful data or results.

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Symptom/ICD-9 Code software for early detection of Gyn cancers

The CDC's Inside Knowledge Campaign is a very detailed awareness program helping women, physicians and caregivers to be more aware of the most common symptoms of gynecological cancers. An early detection software program will tag and link symptoms.

How will your solution make a difference

The software would search for this data and create the alert to the physicians working with the patient. Because gyn cancer symptoms are recognized cross varying scopes of care, the software will find what is missed otherwise, linking the dots.

What is your proposed solution

Implementing the use of a software program that searches for ICD-9 codes reflecting the common symptoms related to all gynecological cancer will increase communication amongst PCP, OBGyn and gastroenterologists to better assess a possible risk for gynecological cancers.

This software would generate an alert once the billing system/patient record sees that any physician notes in a patient chart that the patient is experiencing a common symptom.

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Economic and sociological effects of curing cancer

Truly finding a cure for cancer could have a potentially negative effect on the economics and industry. This project would identify potential negative effects and help to determine a realistic plan for executing a cure for cancer.

How will your solution make a difference

Getting a cure for cancer to real-life people will not get hung up in political limbo.

What is your proposed solution

Study past economic data for similar situations where groundbreaking advances had an adverse effect on the economy. Come up with a practical plan for how we could cope with "no more cancer" from an economic perspective.

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Clinical Trial Data Sharing

The Society of Gynecologic Oncology recommends that data from clinical trials be placed in the public domain, particularly those run through NCI-funded cooperative groups.

How will your solution make a difference

The biomedical research community could re-analyze clinical trial data and repurpose it for other research questions. The public data sharing will facilitate patient enrollment particularly in rare tumors such as gynecologic malignancies.

What is your proposed solution

Clinical trial data should be deposited in the public domain as soon as the trial is completed. Data should be patient-level and include all variables in primary and secondary analyses. This should be required for NCI-sponsored trials and encouraged for industry-sponsored trials. Early phase trials should release data in real-time. Results should be available to patients and investigators with limited regulatory interference.

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Building for a Computational Cancer Ontological Framework

Being involved in various initiatives to share cancer data,there is a bottleneck in utilizing something as simple but fundamentally important as a cancer classification.Strangely none exist that is universally accepted and enabling for data exchange.

How will your solution make a difference

Utilizing coding which is not "human usable" or intuitive leads to miscoding and tagging of data.We have computational coding for lab test, pharmacy drugs, yet it is hard to believe there is nothing for cancer classification much less funding support

What is your proposed solution

Why "human usable" or intuitive?Because genomic data needs "tagging" with an associated tumor type.This tagging is not done by machines but humans.If one group tags renal cell clear cell carcinoma and another tags conventional clear cell renal cell carcinoma,the tagged concepts are the same but not interoperable.Humans need to be able to look and intuitively navigate a familiar front end classification map with back-end coding with ICD-O/SNOMED.

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