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.

Neighborhood Health Partnerships Program Pilot Launch

Finding timely and accurate local health data – health information at the sub-county level – is a challenge faced by researchers, public health officials and communities when implementing and evaluating health and health equity work. Health information is often only available at the county level or higher, even though neighborhoods within counties can have very different demographics and health outcomes.

To address the lack of consistent neighborhood-level data, the Collaborative Center for Health Equity (CCHE) partnered with the Health Innovation Program (HIP) and the Population Health Institute to launch the UW ICTR Neighborhood Health Partnerships Program (NHP). NHP reports will provide information on a variety of health outcome and care measures at the ZIP code level in Wisconsin. Such sub-county data has the potential to offer essential insights into patterns of health inequities and help identify local factors that can promote health and well-being.

Measures currently available from the NHP pilot cross the continuum of care, including wellness, prevention, risk factors for chronic disease, and chronic disease. Jessica Bonham-Werling, HIP Associate Director for Research Operations and NHP Director, comments,

We hope to see even more measures added and additional health systems participating in the future to make the reports even more powerful. We are also piloting a set of action tools to support communities and partners in understanding and using these measures to collaborate, form partnerships, and take evidenced-based action.

A list of the extensive number of community organizations who contributed to the design of pilot reports and tools is available on the recently launched NHP website.

The underlying data is made possible through a partnership with the Wisconsin Collaborative for Healthcare Quality (WCHQ), a collaborative of health systems throughout the state. WCHQ publicly reports standardized quality measures to improve healthcare quality and affordability.

The NHP reports and tools can be used to identify disparities in care and health status, target communities in need, develop and evaluate programs, and provide data to support advocacy and grant applications. The NHP pilot will run through March 2021. During this period the team will be focusing on testing the reports, tools and dissemination processes and gathering feedback.

CCHE colleagues Susan Passmore, UW CCHE Assistant Director, and Tyson Jackson, CCHE Information and Engagement Coordinator, participated in the launch phase of the NHP pilot, and Jackson will also serve as one of the NHP Project Navigators who connect community organizations to the project team. Dr. Passmore notes,

Susan PassmoreTyson and I were delighted to take part in developing the NHP. The project is very exciting and is an excellent fit with CCHE’s health equity mission. Our strategic goal for participation is to increase the sharing of resources in support of community-driven agendas, and ultimately to increase community/academic communication and collaborations in Wisconsin.

An earlier report described the release in the early summer of preliminary ZIP code level reports targeted at estimating the number and prevalence of individuals who may be at risk of developing severe complications from COVID-19.

Investigators interested in requesting reports or learning more can contact CCHE at cche@ictr.wisc.edu.


In addition to support from NIH through the CTSA award to UW ICTR, this project is also supported by the Wisconsin Partnership Program.

Helping Emergency Departments Identify and Prepare for Future Waves of COVID-19

A team led by Manish Shah, Professor of Emergency Medicine and ICTR Co-Director of the KL2 Career Development Program, will develop an advanced surveillance system to identify future waves of the COVID-19 pandemic and provide training to front-line providers.

With funding from the Wisconsin Partnership Program, collaborators from UW, UW Health, and the Marshfield Clinic Research Institute (MCRI) will establish WIsconsin Real-time Emergency Department surveillance and Response Training (WIRED-RT) as a way to complement existing state and national syndromic surveillance programs by using modern data science techniques and predictive analytics. Dr. Shah notes,

Manish ShahEven a few days additional alert of an approaching crisis gives front-line healthcare providers, many of whom are located in emergency departments, a headstart on implementing effective interventions. Being proactive can change an overwhelming challenge to a manageable event.

A key part of the WIRED-RT project is leveraging even small advance notice of pandemic events into just-in-time, simulation-based training for providers in the emergency department.

Amit Acharya, MCRI Executive Director, ICTR Deputy Director for MCRI, and project Co-Investigator, comments,

In addition to helping us identify future waves of the COVID-19 pandemic, the same approach should be applicable to any other public health crisis that manifests in emergency departments, such as opioid overdoses,”

MCRI is an ICTR partner along with the five health sciences schools and college at UW-Madison. Their longstanding expertise in informatics and leveraging novel uses of the electronic health record is a key component of this project. Notably, with its rural patient population, Marshfield has experience with analyzing disease occurrence trends in diffuse populations. Dr. Shah adds,

We are fortunate to have assembled such a strong team for this project; we have expert collaborators from UW including colleagues at the UW School of Medicine and Public Health and College of Engineering, as well as MCRI and UW Health. The web of existing relationships represented means we will be able to make rapid progress in improving our situational responses to crisis events.

The Wisconsin Partnership Program at the UW School of Medicine and Public Health has awarded nearly $3 million in COVID-19 Response grants to UW-Madison researchers and community organizations across Wisconsin to address the COVID-19 pandemic including  four co-funded with UW ICTR.