Can data sharing lead to cancer discoveries?

What if it were possible to tell within days or weeks if a cancer treatment is working?

Cancer therapies can be notoriously grueling, and nobody wants to suffer needlessly through a treatment that’s not working. Sometimes treatment progress can be measured with scans, but often patients don’t know whether a regimen is working until it’s too late to change course. 

A new scientific study, using crowdsourced data from multiple pharmaceutical companies, has helped reveal that a simple blood test can be used to tell almost immediately if a treatment is fighting off the disease in prostate cancer patients.

Dr. Howard Scher, an oncologist at Memorial Sloan Kettering, led the research that analyzed crowdsourced data from the Project Data Sphere (PDS) initiative. Scher is Chief of the Genitourinary Oncology Service at the Sidney Kimmel Center for Prostate and Urologic Cancers.

“We've identified a very particular cell type, which has a specific pattern,” says Scher. That pattern is visible in the blood and can show sensitivity to cancer treatment. “It's incredible. If you have those cells in your blood, you can know just by doing a blood test, long before anything else has happened, if the treatment is working. You no longer have to wait until your scans show progress. And that’s very exciting.”

Project Data Sphere, LLC, an independent, not-for-profit initiative of the CEO Roundtable on Cancer’s Life Sciences Consortium, was designed for sharing, integrating and analyzing historical, patient-level data from phase three cancer clinical trials. Scher’s team was able to use the de-identified data from multiple phase three trials to compare blood samples across treatments.

The goal of the Project Data Sphere (PDS) cancer research platform is to spark innovation by opening up new research possibilities, like Scher’s research, which you can find alongside other publications supported by PDS data online here which was published recently in The Lancet Oncology.

To support these efforts, SAS hosts the research platform and provides access to analytics technology at no cost to researchers. The data in the platform is de-identified and consistent with industry requirements.

Recently, SAS and the CEO Roundtable on Cancer launched a multi-year initiative – Going for Gold – in partnership with Historically Black Colleges and Universities (HBCUs) and Hispanic Serving Institutions (HSIs). Going for Gold extends the CEO Cancer Gold Standard™ employer accreditation to recognize universities that champion health and well-being by advancing prevention, diagnosis, and quality treatment for cancer for their students, faculty, staff, alumni, parents, and communities. The initiative also enables universities to contribute to research efforts through Project Data Sphere, which helps expand access to clinical trial research and offers an open-access digital platform for aggregating and analyzing data to advance health equity efforts.

Why data sharing matters

Clinical research generates a lot of data, but each new clinical trial is designed to answer a specific question or to address an explicit hypothesis. For example:

• Does this new treatment cure the disease faster?
• Does it save lives?
• Does it reduce cancer cells?

Even when the answer is “no” to these primary questions, researchers can learn a lot from negative trials, and the results will inform further research. However, once a trial is over and that one result is recorded, the data is archived and researchers move on.

But what if you could take data from dozens of trials conducted by different pharmaceutical companies and academic medical centers and discover something new that helps prevent prostate cancer? Or aids in curing breast cancer?

Until those datasets are dusted off, tossed together and re-explored, we’ll never know. And that’s exactly why efforts like PDS are important. They bring to the surface a gold mine of undiscovered potential, and until that information is explored, we can only guess what answers lie inside of it.

Results like those from Scher and his team are just the beginning. When more data is added and analyzed from even more trials, researchers can collaborate to find answers no one would even consider asking within the scope of a single trial. 

Patient advocates support data sharing

But how do patients feel about using clinical trial data for purposes beyond the trial? According to patient advocates who’ve signed A Resolution to Share Legacy Cancer Clinical Trial Data, cancer patients are informed about the risks of data sharing and eager to see researchers do more with their data.

After all, most cancer patients enroll in clinical trials for two reasons:

1. They want access to new treatments that could benefit their health.
2. They have a sincere interest in moving the science forward to save the lives of other patients.

“It’s not easy to get on a trial, to find one that fits where you are in your treatment and fits the cancer you have. Those who get on trials are very motivated. They really want to do it for themselves and for other patients,” says Patty Spears, a breast cancer survivor, a research scientist and patient advocate.

“The trial system takes so long to complete one trial to test one drug,” says Spears. “If you can pool that data to get an inkling of where to go next, maybe there’s something to glean from that. Patients are very collaborative. Using data regardless of the outcome of the trial would be amazing.”

Spears says the patients she works with want their data to be used as much as possible. One man told her, “I don’t care if you put my genome on the side of a bus. If it helps cure the next patient, I’m all for it.”

Sometimes, there’s benefit not just in bringing the data together – but also in bringing people together. “One of things I was impressed with at the beginning of the Project Data Sphere initiative is that it got multiple companies to come to the table,” says Spears. “Just getting them together allows them to form relationships and meaning behind the data.”

Spears says she’s seen more openness and meaningful conversations between companies that are normally seen as competitors as a result of breaking down barriers through PDS.

Moving the science forward

Clinical trials serve many purposes. For pharmaceutical companies, they’re an important tool for bringing new drugs to market. For cancer patients, they offer hope for improved health and access to new treatments. For all of us, they help move medical science forward – with the ultimate hope of curing and preventing disease.

As the science becomes more complex, especially in the age of precision medicine and genomic testing, the more data we have to apply to the problem, the better.

With PDS, the hope is that data sharing and collaboration will give researchers more options for testing new ideas and exploring new ways to fight cancer.

“There's a ton of information that's just left on the table, and it’s routine stuff that nobody pays attention to,” says Scher. “Data sharing can draw attention to connections between different commonly measured things that you would just never see otherwise. It can change your whole thinking about where to focus.”