Collaborative Writing Groups (CWGs)
The CWGs are based on major research topics that need further clarification in regards to women and cancer. These topics were identified by a survey of the Steering Committee members. Current topics to be addressed in collaborative writing groups include:
- Communication in the area of sexual health and cancer patients
- Health Behaviors
- Partner's perspective of their own sexual function in correspondence with the cancer patient's own rating
- Pharmacy: Impact of Non-chemotherapeutic Medications on Sexual Function
- Professional training/education in specific fields
- Self-Help: Qualitative Survey of What Cancer Patients Have Tried
- Sexual function, cancer, and other co-morbid conditions
Research Initiative: The Harmonization Collaborative
The Harmonization Collaborative came to fruition through a call to action at the 2015 Scientific Network Conference. This call to action invited institutions interested in developing a harmonized, multi-site registry for women affected by cancer and sexual function concerns. We held one in-person meeting in Chicago in December 2015 and have met remotely for a total of 10 teleconferences to date. This in-person meeting served to create a framework for the work going forward, including consensus building exercises to:
- determine which self-reported domains of sexual activity, behavior and function on which to harmonize;
- determine which elements of the physical examination on which to standardize data collection; and
- articulate clinician’s and scientist’s top research questions.
From that point, a number of remote data collection efforts were undertaken to:
- assess characteristics of existing clinical programs to address sexual function concerns among women affected by cancer;
- assess characteristics of existing research protocols; and
- to establish proof of concept of a standardized data collection form.
This groundwork has been essential to understanding the existing assets in the field and where our work can fill in gaps.
Five working groups have been formed to address:
- patient advocacy;
- centralized IRB oversight;
- harmonization of self-report intake and follow-up forms;
- standardization of the physical examination template; and
We are also developing a manuscript for peer review to describe the process of harmonization and report on efforts to date.
This work has been led by the University of Chicago’s Program in Integrative Sexual Medicine under the direction of Stacy Lindau, MD, MAPP and Emily Abramsohn, MPH. Overall, this collaborative effort has included over 20 individual clinicians and scientists from 14 different institutions, including 10 NCI-funded Comprehensive Cancer Centers. Additionally, we have engaged 15 patient advocates representing 6 institutions, many of whom have participated in a series of focus groups to ensure that our work is patient-centered. This work is ongoing, and next steps include a focus on sustainability.
For more information on or to get involved with the Harmonization Collaborative, please contact:
Emily Abramsohn, MPH
In the fall of 2015, The Scientific Network on Female Sexual Health and Cancer created and approved its bylaws, and was granted 501c3 status. Since that time, the Network has engaged the services of Status Plus, an association management company in Lakeville, Minnesota, and launched a new website.