Cancer Data Science Pulse

Data as a Gift—A Common Theme from NCI’s First Office of Data Sharing Symposium

This year marks the fifth anniversary of NCI’s Office of Data Sharing (ODS). As founding Director, I’ve had the privilege of helping to define the ODS mission of optimizing the scientific data collected by NCI studies to have the greatest impact on the broader community. At ODS, we’re charged with developing and leading a comprehensive data sharing vision for NCI that seeks (ideally) to balance broad and equitable data sharing with the needs of the larger cancer research community.

Recently, we held our inaugural NCI Data Sharing Symposium to engage with that cancer community about the powerful impact and benefits of high-value data. This meeting was the first of its kind for NCI and will now be an annual event. The meeting gives us the opportunity to bring together, each year, all the various people with interests along the full data sharing spectrum to discuss today’s most crucial topics in a safe and inclusive manner.

This year’s symposium covered a range of practical data sharing solutions and aspirational goal setting. We had a chance to hear a number of critical perspectives from the cancer community, as well as comments by NCI and NIH leadership (i.e., former NCI Director/current NIH Director, Dr. Monica Bertagnolli, and NIH Associate Director for Data Science, Dr. Susan Gregurick). These perspectives captured central themes on the impact, vision, and future direction of data sharing for cancer patients and survivors.

See the archived symposium proceedings for details on the topics covered.

One of those critical perspectives was given by Mr. Adam Hayden, a cancer survivor and patient advocate. Mr. Hayden opened the symposium by challenging the research community to be inclusive and to consider the role of patients at every level—when we’re planning and conducting scientific research and when we’re setting and executing policy.

Mr. Hayden reflected on the changes he’s experienced in accessing medical information and records between 2016 (the year of his diagnosis) to now, in 2023, when patients have more transparency in managing and sharing their data than ever before. This digital shift is greatly improving how patients interact with their doctors and care teams, and ultimately helps them better understand their disease and treatment options.

He concluded his opening remarks by touching on an often-overlooked point in cancer research: “Patients are the data providers.” That statement resonated with me and many in the audience. I think it’s paramount that we, as researchers and clinicians, acknowledge the patient’s pivotal role in improving the future of all patient care through their “gift” of data.

Unwrapping the Gift of Data

This idea that data is a gift (i.e., a generous and selfless donation from one patient to many others) likely resonates with all of us working in the evolutionary data sharing space. After all, data are vital for increasing knowledge. We all know the value of good data in laying a solid foundation. But have you considered just how important it is to see the big picture—the one we create when we properly align and connect each piece of disparate information in our quest for this knowledge?

Broad data sharing drives new discoveries and innovation in the wider community. For example, it may help to envision how an artist recreates a particular scene. An artist might use a single color to draw a picture, creating an outline or one-dimensional view of the subject. But given more colors, the artist can create a much more complete and accurate representation. Minor details become more evident. Like a forest drawn in a single color. When you add more colors, you can easily see it’s late fall in the northeast with vibrant red and orange leaves versus early spring, with an all-green landscape dotted with pastel buds.

It’s the same with data in cancer studies. When researchers have the opportunity to compare, combine, and analyze many data sets, the information becomes enriched with color and context. We gain a better understanding of the single study, but also a more complete picture of the broader field under study. Ultimately, this gives all of us a better understanding of cancer and opportunities to make new discoveries that we otherwise may have missed.

Appreciating the Gift of Data

All our data sharing starts with patients and, ultimately, should end with improved outcomes, therapies, and better overall quality of life for those patients. We are simply the stewards. We help to ensure that each data set can contribute to the laudable goal of reducing or eliminating the burden of cancer for all.

We have an essential goal at ODS—to ensure we make key findings from each individual NCI study available to the wider research community in formats and through platforms that enable new analyses and hypotheses. In addition, as a public-serving entity funded by the American taxpayer, we (and all of NIH) have an obligation to turn the public’s investment into real-world solutions to meet the healthcare needs of all people.

By leveraging the power of each individual data set, we can exponentially impact and benefit everyone in the cancer community and (at the same time) maximize public funding. This underscores how important it is that we appreciate the gift of data and implement policies that will best serve our patients’ interests.

One such policy, heavily informed by NCI’s experience with the Cancer MoonshotSM, is the NIH Data Management and Sharing (DMS) policy, which prioritizes comprehensive planning for data sharing and requires that investigators make data management and sharing an integral part of their research, rather than a final action signifying their study’s conclusion.

Changing the Culture of Data Sharing

NIH, and a growing number of investigators conducting biomedical research, are actively promoting broad and open data sharing. For some, adopting such practices requires a “culture change” in how we value, manage, and use the data gifted to us by our patients. Concerns about privacy, data, or system security, and the potential for misuse of sensitive information can overshadow the benefits of broad data sharing.

At ODS, we’re actively working with our stakeholders to facilitate positive changes that promote equitable data sharing. We’re working now across NCI and NIH to:

  • establish consistency in how NCI studies implement data sharing policies,
  • facilitate collaboration and demonstrate the benefits of open science initiatives,
  • define data frameworks for enabling novel insights from comprehensive and robust data sets,
  • institute efficient data management and access processes that have the most impact for our diverse population of stakeholders, and
  • ensure proper sharing and accreditation of all NCI data in FAIR (i.e., findable, accessible, interoperable, reusable) repositories.

We know there’s more we need to do to fully shift the current research culture into optimal “gift donors, stewards, and recipients.” We’re excited to work closely with the full cancer community toward that goal. I’m confident that, working together, we can accelerate research and innovation by creating a broader pool of information, ultimately leading to more innovative treatments and better patient outcomes. Additionally, by sharing data we can reduce the risk of duplicating efforts, become more efficient, and free up resources for new research efforts and patient care.

In wrapping up, I’d like to quote a remark that Dr. Susan Gregurick made during the symposium’s fireside chat. She succinctly noted, “The data that we generate is a gift that we're giving to our future generations. And that’s the best gift that we can give; it lives beyond us.”

Data truly are a gift. If we properly value, protect, and responsibly use that gift, these data will continue to benefit our patients, survivors, and their families for many years to come.

Want to learn about NCI ODS’ efforts to enhance data sharing? Join their email listserv for future updates.
Director, Office of Data Sharing, CBIIT
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