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
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
This year’s symposium covered a range of practical
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
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
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
Changing the Culture of
NIH, and a growing number of investigators conducting biomedical research, are actively promoting broad and open
At ODS, we’re actively working with our stakeholders to facilitate positive changes that promote equitable
- establish consistency in how NCI studies implement
- facilitate collaboration and demonstrate the benefits of open science initiatives,
- define data frameworks for enabling novel insights from comprehensive and robust
- 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.
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