New Web-Based Resource Conveys People’s Experiences with Inherited Cancer Risk & Treatment

The University of Wisconsin-Madison announces the launch of an innovative new resource for understanding how patients with inherited cancer risk are experiencing the emerging science of genetic medicine.

Cancer Risk That Runs in Families is the latest in a series of collaborative studies conducted by the members of the Health Experiences Research Network. HERN is a network of researchers from UW-Madison, Johns Hopkins University, the University of New Mexico, Yale University, Oregon Health and Science University, the University of Utah-Salt Lake City, and the Veterans Administration. This study joins two others previously published on the HERN website, which has been visited by over 320,000 users since it was first launched in 2016. Maureen Smith, Director of the ICTR Community-Academic Partnership program, comments,

Maureen Smith, MD, PhD, MPHThe incredible value of this resource is the diversity of voices from across the country speaking not only to other patients with inherited genetic conditions, but also speaking to scientists. The patient experience is critical to asking the scientific questions that ultimately have the most impact.

Patient contributions illuminate how the logic of genetic medicine can often conflict with the practices of health insurers, limiting access to genetic screening and undermining the benefits of new clinical insights. Patients also describe how diagnoses of elevated genetic risks reverberate outside of clinical settings, affecting the lives and choices of entire families. Rachel Grob, UW Principal Investigator for HERN, comments,

The great virtue of this approach to understanding patient experience is that it moves us beyond the single anecdote about one patient or one family and helps us understand patients’ voices in the plural.

The powerful methods used in this study allow us to hear from those patients whose voices are least often heard, and who often don’t benefit as fully from scientific breakthroughs as do people with good health insurance and easy access to medical experts.

Investigators can currently access patient experience data for the following health conditions: Depression in Young Adults, Cancer Risk that Runs in Families, and Traumatic Brain Injury in Veterans. Other study topics under development for the web resource include patients’ experiences with breast cancer, childhood cancer, Gulf War Syndrome, clinical trials, and opioid use disorder. Ongoing pilot studies are examining Cancer and Fatigue, Adolescent Experiences of Reproductive Health, End Stage Renal Disease, and Patient Experiences with COVID-19.

The Cancer Risk that Runs in Families project was supported by UW ICTR, the Wisconsin Partnership Program, and the Center for Patient Partnerships.