At the recent 47th Annual Oncology Nursing Society (ONS) Congress in Anaheim, California, Dr. Lisa Carter-Harris of Memorial Sloan Kettering Cancer Center and Dr. Kelly Brassil of MD Anderson Cancer Center each gave a presentation about ethical considerations in oncology research in light of the latest technological platforms and interventions. Afterwards, they spoke with Oncology Data Advisor to further explain the roles of technology and social media in oncology research and the implications of these advances for patient care.
Oncology Data Advisor: Dr. Carter-Harris, can you give us an overview of what social media–based research is?
Lisa Carter-Harris: PhD, APRN, ANP-C, FAAN: I like to think of social media–based research as just another platform that you use to either recruit or conduct an intervention. Like the old days when we used to recruit in clinics or through newspaper ads, this is just another platform to offer a study opportunity to potential participants. It's also a fascinating way to leverage a platform to actually embed an intervention and reach a broader range of people that you might not reach in more traditional advertisements.
Oncology Data Advisor: What are the ethical considerations that should go into designing social media–based research?
Dr. Carter-Harris: I think of it as the same ethical considerations that we take for traditional studies, with the exception of realizing that with social media–based research, you might have bystanders that are actually a part of the research. Say you're a research participant, and your spouse is walking by or sitting next to you and isn't necessarily consented as part of the project. They end up being part of it because they're in proximity to you and you're on a social media platform. We really think about how to protect the confidentiality of the individual who's participating, as well as the data that you might inadvertently collect as part of your research study.
Oncology Data Advisor: Great. Thank you so much. Dr. Brassil, for background, what is the role of digital technology in research-related data collection?
Kelly Brassil, PhD, RN, FAAN: Great question. Digital technology, as much as it's inundating our day-to-day lives, can also be used for research purposes. Think about how you might wear a wrist-worn wearable device, for instance, or you might have a digitally-connected device in your home, such as a scale, a blood pressure cuff, or a glucometer. All of these, in addition to platforms that allow for digital collection of patient-reported outcomes, are available to us to use as tools in our research process.
Oncology Data Advisor: What are some of the ethical considerations that are involved in technology- derived data?
Dr. Brassil: One of the major ones that comes to play is the question of who owns the data. When we're consenting individuals for research, as much as we often may say, "I accept the terms and conditions," we really need to have an understanding of what those terms and conditions represent. Who will have primary access to our data? Will it be de-identified? Will it be resold for commercial or secondary analysis purposes? That trail is really important in protecting the integrity and confidentiality of participants, consistent with the rubric of research ethics.
Oncology Data Advisor: What are the implications of digital research interventions for under-resourced populations?
Dr. Brassil: Any time we're thinking about an intervention for research or a way of collecting data, we have to be certain that it's something that's accessible and that it's going to be meaningful for the population. As exciting as new technologies can be, if a community doesn't have, for instance, reliable Wi-Fi, it can impact both our ability to collect full data sets as researchers and our participants' ability to benefit from that knowledge as participants. Ensuring that we have technology that is globally accessible, that is considerate of sensory deficits and other needs that communities might have, and that it's culturally congruent to the populations we serve, is critical.
Oncology Data Advisor: Great. Thank you so much.
About Dr. Carter-Harris and Dr. Brassil
Lisa Carter-Harris, PhD, APRN, ANP-C, FAAN, is an Associate Attending Behavioral Scientist at Memorial Sloan Kettering Cancer Center. Her research focuses on understanding factors related to lung cancer screening behavior, including shared decision making, stigma, and clinician referral patterns, as well as on improving cancer prevention, early detection, and access to care.
Kelly Brassil, PhD, RN, FAAN, is a Lead Care Manager for ASK MD Anderson Cancer Center Clinical Services. Her research focuses on studying patient-reported outcomes for patients with acute and chronic leukemia, breast cancer, and prostate cancer.
For More Information
Brassil K, Carter-Harris L & Saligan L (2022). Ethical considerations in the changing landscape of oncology research. Presented at: 47th Annual ONS Congress.
Transcript edited for clarity. Any views expressed above are the speakers' own and do not necessarily reflect those of Oncology Data Advisor.