In his final State of the Union address in January 2016, President Obama announced a new American “moonshot” effort: finding a cure for cancer. The term “moonshot” comes from one of America’s greatest achievements, the moon landing. If the scientific community can achieve that kind of feat, then surely it can rally around the goal of finding a cure for cancer. President Obama put his second-in-command, Vice President Joe Biden, in charge of “Mission Control” for the cancer moonshot efforts.
Though this is certainly an ambitious undertaking, what’s encouraging is that the project isn’t starting from scratch. Researchers and clinicians have already made remarkable progress in the forms of research, clinical trials, drug development and more. There already have been many masterful achievements that propel this effort to its goal. For example, the successful mapping of the human genome nearly two decades ago provided a tremendous jumping-off point for customized cancer treatments and potential cures. But in order to land this moonshot, there must be significant innovation in how all of these stakeholders communicate, collaborate and share important information.
Silo-breaking: as vital as funding?
Two of the biggest challenges of this project are to provide increased funding to the strategic participants, and to increase collaboration and information sharing among the numerous research teams and clinicians all around the world. Vice President Biden has said that he wants to “break down silos and bring all the cancer fighters together—to work together, share information, and end cancer as we know it.” The goal is to double the pace of progress, or as he put it: “to make a decade worth of advances in five years.”
Those of us in the cloud computing community are especially invested in the efforts to increase coordination, eliminate silos and open up access to information. These things can only be done through improving upon and innovating technology solutions, so that storing and managing data doesn’t kill productivity. Let’s consider some of the issues that will affect what underlying technologies can be utilized to further drive collaboration and support access to information.
Protecting massive amounts of private data
A project of this magnitude will have massive amounts of data, generated by a multitude of sources. These large data sets must use common data elements (data descriptors, or metadata) to ensure that researchers are comparing apples to apples. Toward this end, the National Cancer Institute (NCI) has developed the Common Data Elements (CDE) to serve as a controlled vocabulary of data descriptors for cancer research. The CDE will help facilitate data interchange and inter-operability between cancer research centers.
Big data and learning algorithms will enable researchers to identify patterns and anomalies that, for Instance, may help to identify patients who can benefit from standard treatments, or whose tumors require a different approach. Given that these large data sets will contain highly personal patient health information that can’t be anonymized, they will need to be protected with the strongest measures for data privacy to protect patients‘ rights and to maintain HIPAA compliance.
Preserving data integrity through controlled access
Of course, data integrity is of paramount concern. The data and other forms of information will come from numerous sources, and technology solutions will be needed to ensure that it maintains its consistency—that it isn’t inappropriately accessed and changed or corrupted. This means that access control to research information is critical. Yes, the project aims to increase sharing of data, but it needs to be shared with the right people in the right ways. Much of the information will be in documents, not databases, and this means access control, version control, and document retractions and expirations are important features for the underlying collaboration technology. And of course, all this must be done with strict HIPAA compliancy and patient privacy.
Setting content free to get work done
The time spent on collaborating and sharing information has ballooned by 50 percent or more over the last two decades, according to Harvard Business Review. Too much time is wasted trying to piece together disconnected information among team members who are scattered across the globe, leaving little time for actual work to get done.
Teams need virtual workspaces built for specific business and clinical research processes. Think in terms of flowing content across the extended ecosystem, instead of just improving systems of record behind the firewall. To take on this initiative, the clinical research community requires what some industry analysts call “systems of engagement,” meaning information only comes to life when it is put to use and acted upon. But many technologies fail to account for specific use cases (such as global clinical research) or the security and compliance needs of information in motion (such as confidential patient data).
In this race to exterminate cancer, the first challenge that must be resolved is to control the flow of information across the complete content lifecycle — even after external sharing — while also setting that information free so those who access it can increase productivity. Solving the collaboration challenge will ultimately allow researchers to remain focused on the important work of the cancer moonshot initiative.
The countdown is on…
By Daren Glenister