Cancer Data Science Pulse
Data Sharing Advocacy—How a Cancer Survivor Seeks to Enhance Data Sharing to Better the Patient Experience
For Mr. Steve Friedman, NCI’s mission to lead, conduct, and support cancer research is personal. By providing the cancer research community with data science and sharing tools, he lends a hand in shaping the field that saved his life.
“I was diagnosed in 1995 with Stage 1 testicular cancer. At the time, I was working full-time in managed healthcare and getting my master's degree at night. Following my cancer diagnosis, I realized I wanted to give back and shift my focus to oncology.”
The doctors caught his cancer at an early stage and treated it with a cisplatin-based chemotherapy plan, a treatment for patients diagnosed with various types of tumors.
“I became connected with NCI while participating in cancer advocacy, and I realized I wanted to spend my career here. Working with the largest cancer research organization in the world seemed like a good way to give back.”
Mr. Friedman joined NCI in 2004 as a contractor for the Protocol and Information Office for NCI’s Division of Cancer Treatment and Diagnosis. Almost two decades later, he now serves as senior advisor for operations for the Division of Cancer Control and Population Sciences’ Surveillance Research Program. He does this while working with several major initiatives, such as the Surveillance, Epidemiology, and End Results (SEER) Program, to promote data sharing and protect patient privacy.
Advocating for Data Sharing in Cancer Research
“Data sharing, to me, means finding a better way to address the problem of cancer.”
When Mr. Friedman received his diagnosis in 1995, the internet was still in its early stages, and data sharing mostly included one-to-one discussions with other survivors. Resources, for him, were scarce and not specific to testicular cancer.
“Many survivors indicated that information wasn’t provided on the side effects of chemotherapy or potential fertility issues. Lack of data accessibility can result in a lack of knowledge and confidence when making critical health decisions. This has resulted in my career path to enhance and leverage data sharing across the researcher and patient spectrums.”
Data availability allows researchers to further their work in determining testicular cancer causation, generating evidence to help other patients. This is important for Mr. Friedman, as there is no current known cause of testicular cancer.
“Having reliable data that researchers can use helps them understand what works to address the cancer problem. Our goal is to pursue early detection because there’s a high success rate when you catch testicular cancer at an early stage. If we can get ahead of that earlier, we can do a great service to those at risk. If we can figure out causation, we can move into a prevention-type posture before a diagnosis. It’s not just about early detection and effective treatment; it’s also about prevention.”
Getting Data to Better the Patients’ Treatment Experience
During his work within the cancer advocacy community, Mr. Friedman took part in operational efforts that eventually led to Gleevec, a form of chemotherapy in a pill or tablet taken at home, approved by the U.S. Food and Drug Administration. The shift from inpatient chemotherapy infusion to oral chemotherapy taken at home has benefits for the patient, but it opens a data collection gap, unlike prior methods.
“In the traditional model, doctors or hospitals administer chemotherapy and radiation to patients under their direct care. Now that we have this tremendous shift where you can take your chemotherapy by pill at home, we’re not getting as much data from the doctor because they aren’t interacting with patients like those traditional care programs. The SEER Program is working on getting that data from other vendors, such as pharmacies. When patients go to refill or pick up a prescription, we can assess if the patients are dealing with a recurrence, new diagnosis, or metastatic activity on an existing diagnosis. Having access to data from pharmacy or genomic vendors rounds out our data sets and allows us to answer questions we may not know we need to ask.”
In addition to working with pharmacy vendors, SEER also uses genomic data, electronic pathology reporting, imaging, and electronic health record vendors to understand the patient’s cancer journey better, considering the shift in treatment locations and types. Data from these sources may not show up in some reportable mechanisms, and this gap may result in an incomplete understanding of their cancer journey.
“Some of this data is unstructured data, which is entered as a note or free-text field, but it may hold important information. By collecting that data and closing the gap, we can help provide a longitudinal view across a patient’s experience and help researchers answer key scientific questions.”
Enhancing Data within Clinical Trials
The research community can enhance and analyze data sets made available to them by utilizing clinical trial data.
“Before joining the Surveillance Research Program, I worked within the clinical trials side of NCI and learned how to keep up with the advances in both the science and IT that’s supporting science. Less than 5 percent of eligible adults participate in clinical trials. There are several misconceptions about what happens within clinical trials, and I helped educate a friend who was diagnosed with a treatable form of kidney cancer on those concerns. I assured him he would still get the best possible care, and he could decide whether to stay in the trial or not.”
“We hope that the evolution of the SEER Program will continue to include incorporating SEER data when developing new clinical trials. Over the years, we have developed a suite of tools to help researchers improve their work. For example, SEER*Stat is a tool that allows users to search through available data sets based on disease, age, race, and ethnicity. This helps researchers get an understanding of the information that those data can reveal. We continue to advance tools, like SEER*Stat, and take user experience into account to support the cancer community further.”
As it continues to enhance those tools, recent efforts of the SEER Program also include improving diversity in clinical trials. Researchers can better assess the relevant data collected by ensuring that diversity is well represented.
“Ethnic as well as economic subgroups need to have representation. There is a fair amount of homogeny within the adult clinical trial population, but members of our communities across the board are diagnosed with cancer, and that needs to be reflected in the data that is assessed and with which scientific or policy-driven decisions are made.”
Reflecting on Survivorship
“A few decades ago, testicular cancer had more than a 90 percent mortality rate. Now, it has about a 95 percent cure rate, especially when diagnosed at an early stage. I’m thankful for the science that developed the tools to detect, diagnose, and treat my cancer. I am grateful for the life I have with my wife and three kids, and I try to remember that nothing has ever been as bad as the worst days of chemo.”
“The successes within cancer research occur because of collaborations, something that’s true of the SEER Program too. As the SEER Program celebrates its 50th anniversary, this collaborative posture keeps data sharing as a central mission, whether it's sharing data with SEER registries, the broader research community, or NCI. Not to mention the collaborations we are involved with, such as Cancer Moonshot℠ and the Childhood Cancer Data Initiative.”
“My survivorship gives me the perspective that many others within the field haven’t had, and I try to be sure the patient voice is represented and considered as we do our work.”
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