One of the most devastating consequences of a severe medical diagnosis such as breast cancer can be the sense of isolation and confusion many patients experience. Despite caring and empathetic health care teams, individuals may have many questions about what to expect and how to cope, both during and after treatment, that are best addressed by others who have walked a similar path.
This situation is the precise scenario addressed by the recently released Breast Cancer web-based resource developed by the Health Experiences Research Network (HERN). HERN is a national network of researchers including a UW-Madison group led by Rachel Grob, PhD, that is housed within the UW ICTR Community Academic Partnerships. Grob, a Scientist III in the UW Department of Family Medicine and Community Health and Director for National Initiatives and Clinical Professor in the Center for Patient Partnerships, comments:
Forty amazing individuals described their patient experiences with breast cancer through video and audio clips for this project. They were willing to help others by sharing their complex, beautiful, and highly personal stories with the public on diverse topics spanning diagnosis, treatment, and survivorship. Thank you!
In addition to the profound benefit to other patients, this resource may also be of value to researchers, clinicians, and health professional students. People who shared their stories about experiences with breast cancer discussed many aspects of their care and living with cancer. While breast cancer is a highly researched health condition, the individuals who contributed to this project shared experiences with some topics that are not commonly highlighted in research. These include:
- Living with Metastatic Disease
- Trans and Non-Binary Experiences
- Sex and Sexuality
- Complex Experiences with Hormone Therapy
- Diversity, Equity, and Taking Action
- Advocating for Others and Public Awareness
Grob recently discussed the Breast Cancer module on a Voice of America podcast. The breast cancer study joins three other disease-specific modules previously published on the HERN website, which has been visited by over 320,000 users since it was first launched in 2016. The HERN resource was developed with ICTR pilot grant funding and additional support from the Wisconsin Partnership Program and the Center for Patient Partnerships.
Christine Sorkness, RPh, PharmD, ICTR Senior Associate Executive Director and Leader of the ICTR Pilot Awards Program, adds,
The work done by Grob’s study team has been amazing and unique. The HERN team earned the respect and trust of diverse and brave people who are often not invited to share such compelling stories with others. We are proud to have provided pilot award support to help make this happen. As a breast cancer survivor myself, it is easy to envision the impact and benefits of this resource on patients and their families at many steps – from diagnosis through treatment and beyond.