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Summer ’19 at the Max Planck Institute

Photo credit: Melisa Basol

This past June I was selected to attend the Summer Institute on Bounded Rationality with 39 other emerging scholars from around the world. It was a wonderful experience!

Now in its 19th year, this international program is hosted by the Center for Adaptive Rationality and the Harding Center for Risk Literacy at the Max Planck Institute in Berlin.

Participants attend curated talks and workshops on decision-making under uncertainty and learn how to effectively communicate uncertainty (e.g., of scientific evidence or technological risk) to the public. Attendees also have the chance to present their own work-in-progress and get feedback from leading researchers and peers.

This year’s Institute theme was “bounded rationality in a digital world.” We examined human decision-making in a range of contexts, as well as issues in modeling and ethical dilemmas in AI. Speakers included Gerd Gigerenzer, Ralph Hertwig, Stefan Herzog, Iyad Rahwan and many others.

I presented work from my dissertation on how the public makes decisions about whether to participate in precision medicine research, navigating the many uncertainties inherent in this space.

Award to study scientific uncertainty from AEJMC

It was back to Washington, DC, in August for the Association for Education in Journalism and Mass Communication Conference. This year, I received the Graduate Student Research Award from the Mass Communication & Society Division, presented at the MCS Awards Luncheon. This $5,000 award will support a mixed-method study exploring how the public evaluates science news and responds to reports of uncertain science. I’m excited about the opportunity and can’t wait to return to AEJMC to present the study findings!

Summer ’18 at Huntsman Cancer Institute

Do cancer patients know how genetic testing can inform their treatment decisions? Research overall suggests that many do not.

This summer I had the opportunity to work as a research assistant in Dr. Kimberly Kaphingst’s lab at the Huntsman Cancer Institute in Salt Lake City. I helped with research projects examining the current state of communication research in the area of cancer genetics.

I also had the chance to present results from our genetic cancer communication scoping review at the HCI Trainees Symposium. We summarized papers in this area and will make that summary available to the public soon.

HCI was recently named one of the most beautiful hospitals in the U.S., and it’s no wonder!

I took full advantage of the back patio for work afternoons overlooking the foothills, mountain bikers, blue skies and birds.

Interviewed for Data & Society’s “Fairness in Precision Medicine” Report

I recently had the chance to participate in a research initiative called the Fairness in Precision Medicine project, led by the nonprofit organization Data & Society. The project examines the potential challenges we face in this emerging, data-driven era of medical research and healthcare.

The PI on the project, danah boyd, is a scholar whose work examines the intersection of technology and society. She’s been an inspiration to me since I read this Fast Company article called “Generation Flux” back in 2012. So needless to say, I was thrilled to learn about and get a chance to contribute to the project!

In their words:

“Supported by the Robert Wood Johnson Foundation, the report is the first in a new series of research projects at Data & Society focused on the future of health data.

The authors – Data & Society Postdoctoral Scholar Dr. Kadija Ferryman and Data & Society Researcher Mikaela Pitcan – present insights on emergent tensions in the field arising from extensive qualitative interviews with biomedical researchers, bioethicists, technologists, and patient advocates.”

For my contribution, I discussed the potential for unintended and negative impacts of highly personalized health information and recommendations, especially as big data and digital technologies are increasingly tapped to provide such information.

I was honored to be a contributor alongside my mentor at NCI, chief of the Health Communication & Informatics branch Brad Hesse, as well as University of Utah bioethicist Jim Tabery.

The Fairness in Precision Medicine report was published February 26, 2018. Learn more and download the (free) report here.

I was also interviewed for a related piece that explores on potential unintended consequences of conveying genetic information to patients. Read The Risks of Knowing Your Risks too!

What precision medicine projects am I working on? Visit my project page

Summer ’17 at the National Cancer Institute

I spent this summer at the National Cancer Institute (NCI) as a research fellow between master’s and PhD programs, and it was a blast!

I was working in the Health Communication and Informatics Research Branch with incredibly smart and thoughtful people, joining projects related to cancer communication, genetic communication, and precision medicine implementation.

Observing cognitive testing of the HINTS instrument

The highlight for me was getting to be a fly on the wall in meetings where cutting-edge medical and bioinformatics technology is being developed and research and policy are being shaped.

Another highlight was learning about HINTS (Health Information National Trends Survey), a tool for understanding how the public is accessing, using, and trusting sources of health information. We even got to visit Westat to see cognitive interviewing of the next questionnaire! I’m looking forward to collaborating with NCI scholars and others to report data from the newest HINTS cycle at the HINTS Data Users Conference in 2019.

Overall my experiences at NCI deepened my understanding of potential challenges that could arise during precision medicine communication processes, since this is an emerging area of research for me. Related to this, I was interviewed alongside Dr. Brad Hesse for Data & Society’s Fairness in Precision Medicine project. Being a big fan of danah boyd, the PI on the project, I was thrilled to take part in this. Can’t wait to hear their reports.

And, of course, there was tango!

Precision medicine communication: What could go wrong?

We’re entering an era of precision medicine—healthcare tailored to the individual, based on a range of biological and psychosocial factors—and with it comes both great enthusiasm and deep concerns.

Developments in genomic medicine and digital medicine are unfolding rapidly, and healthcare practitioners and communicators must quickly prepare to facilitate the implementation of precision medicine approaches (e.g., the All of Us Research Program). Most importantly, we must be ready to fully engage patients and the public in the process.

What are the potential challenges that could arise during precision medicine communication processes, and how can we address them?

These questions drive the focus of my current PhD work in health communication. Over the past 2 years, I’ve had the opportunity to deepen my understanding of precision medicine and exchange ideas with many people on the forefront of precision medicine implementation, first at the Frontiers in Precision Medicine symposium hosted at University of Utah, and then during a summer fellowship at the National Cancer Institute.

The first paper in this line of work has just been published in Journal of Health Communication: When personal feels invasive: Foreseeing challenges in precision medicine communication

If you’d like a copy of the full article, it’s available here.

Stay tuned for details on empirical projects launched in 2018-19 that pertain to communication of uncertainty in precision medicine. Updates will be posted here and on the ResearchGate project page.

If you’re interested in discussing or collaborating, please feel free to contact me on ResearchGate or via University of Utah.