Tag Archives: precision medicine

Communicating Uncertainty in Precision Medicine (forthcoming in ABM)

My colleagues and I conducted an experiment testing public responses to the disclosure of uncertainty in a news story about precision medicine research. We examined the communication of uncertainty about both scientific utility and data governance.

Here’s a brief summary of what we found:

Conveying uncertainty of either type had no overall main effect on outcomes. Instead, those who reported perceiving greater uncertainty had lower attitudes, trust, and willingness to join, while those with more tolerance for uncertainty, support for science, and scientific understanding responded favorably to the scientific uncertainty disclosure.

The article is forthcoming in Annals of Behavioral Medicine. In the meantime, I’ve shared a preprint.

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.

New paper in JHC: Foreseeing challenges in communicating precision medicine

Repost of University of Utah’s Communication Dept. announcement:

Communication Dept. Scholars Publish on the Critical Role of Communication in the “Precision Medicine Era”

Precision medicine is the notion of a precise approach to healthcare—one that takes into account individual genetics, environments, and behaviors. As we enter this era of highly personalized care, there will likely be opportunities to take our health to new heights. But there may also be unforeseen consequences.

To date, little is known about how healthcare consumers will respond to highly personalized guidance and treatment. The assumption is that responses will generally be favorable. Yet in the media and in online public discussions about precision medicine, concerns have been raised about invasions of privacy and autonomy.

What challenges could arise as precision medicine is implemented in research trials and clinical settings? And can we address them, or prevent them, through better communication?

These questions are explored in a recent paper published in the Journal of Health Communication. The authors—Communication PhD student Chelsea Ratcliff and professors Kim Kaphingst and Jakob Jensen—highlight the potential for patient alienation in certain precision medicine contexts, especially among minority groups. They offer an agenda for research to guide communication with patients and the public, in order to foster understanding of precision medicine and informed participation in precision medicine initiatives.

In engaging these important questions, scholars from across disciplines can help bring ethical concerns and patient perspectives to the planning and implementation of precision medicine, ensuring medical and technological advances that are fair and beneficial for all.

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The article can be found here: Ratcliff et al 2018.

Lucky us, it was included in the CDC’s Health Communication Digest!

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.

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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. 

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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.