There is an expanding role for oncology nurses in the field of cancer genetics, explained Sue Friedman, the founder and executive director of Facing Our Risk of Cancer Empowered (FORCE).

Friedman personally had genetic counseling with an oncology nurse, and said that it is important for all nurses to be aware of genetic testing and which cancers are associated with mutations, so that they can have key conversations with their patients.

Videos

Genetic Discussions in Oncology Nursing

Sue Friedman, Executive Director, FORCE (Facing Our Risk of Cancer Empowered), discusses the importance of informed decision-making.

Articles

Sue Friedman on Informed Decision-Making in Hereditary Cancers

Sue Friedman, Executive Director, FORCE (Facing Our Risk of Cancer Empowered), discusses the 

, which is the first-ever patient-powered research registry created and governed by and for people affected by hereditary breast and ovarian cancers.

Sue Friedman, discusses the ABOUT Network, which is the first-ever patient-powered research registry created and governed by and for people affected by hereditary breast and ovarian cancers.

Sue Friedman Provides an Overview of the ABOUT Network

FORCE has collaborated with researchers at the University of South Florida and the Michigan Department of Community Health to form the ABOUT Patient-Powered Research Network (PPRN). Our intent is to improve informed decision making and health outcomes for people affected by hereditary breast, ovarian, and related cancers.

Unlike traditional research that involves patients only as research participants, ABOUT (American BRCA Outcomes & Utilization of Testing network) will conduct patient-centered outcomes research involving consumer participation in every aspect. We plan to enroll 10,000 people, build a network governance structure that includes patients and advocates, and compile and refine people’s real-world experiences to shape and prioritize the important research questions.

Research driven by patients and their real-world experience is not new, but the Patient-Centered Outcomes Research Institute (PCORI), the government-funded agency focusing on it, is new. The priority is conducting research to answer four common patient questions:

		Given my personal characteristics, conditions, and preferences, what should I expect will happen to me?

		What are my options, and related potential benefits and harms?

		What can I do to improve outcomes that are most important to me?

		How can my healthcare providers help me make the best decisions about my health and healthcare?

The ABOUT Network is one of 18 PPRNs funded by PCORI (and the only PPRN focused on hereditary cancer) to participate in PCORnet, PCORI’s national research network that will conduct large-scale patient-centered outcomes research.

People with hereditary breast and ovarian cancer (HBOC) must make important healthcare decisions in the face of research and knowledge gaps. Although strides have been made in HBOC research, FORCE is contacted daily by constituents who are interested in answers to questions such as:

		Will my health and quality of life be improved or harmed by taking hormone replacement?

		Are certain treatments better or more harmful for people with hereditary cancers?

		Which factors affect satisfaction with a particular type of breast reconstruction?

We will use a series of surveys, polls, and needs assessments—what we call Generator and Percolator (GAP) tools&mdash;to capture our community’s health inquiries, refine and process them into research questions, and answer them through our research registry.

Those who are interested in joining the ABOUT research registry and/or to learn more about participating can visit 

. Participants will be asked to read and agree to a consent form, provide their preferences regarding the use of their secure data in future research, and answer a questionnaire about their health and outcomes. The information shared confidentially through the registry will be used to conduct patient-centered outcomes research. We will also offer people the opportunity to help us “Free the Data” by anonymously sharing their BRCA test results.

We are partnering with other organizations to achieve our enrollment goals, build an inclusive governance structure, and assure diversity and representativeness in all aspects of the ABOUT Network. Our partners will help us promote research opportunities to their membership, assess the information and resource needs of their constituents, and participate on the ABOUT Network Steering Committee. Our partners include: Black Women’s Health Imperative; Ovarian Cancer National Alliance; Sisters Network®, and the 

FORCE is the only national nonprofit organization devoted to individuals and families affected by hereditary breast, ovarian, and related cancers. For more information, please visit 

FORCE has collaborated with researchers at the University of South Florida and the Michigan Department of Community Health to form the ABOUT Patient-Powered Research Network 

Patient-Powered Registry Uses Real-World Experiences to Help Guide Research

Everything we know and will learn in the future about hereditary cancer risks, screening, and treatment comes from years of scientific research and the direct participation of thousands of volunteers.

Finding and enrolling in research studies gives us the ability to directly improve healthcare and to help scientists discover better ways to prevent and detect cancer, extend survival, and improve quality of life for ourselves and future generations.

Hereditary cancers are different from “sporadic” cancers, requiring different screening, prevention, and treatment methods and different approaches to research. Many research studies are open and need patient participation. But hereditary cancer patients make up a small subset of all cancer patients, and hereditary cancer research studies are a small part of all cancer research.

For every study looking specifically at hereditary breast and ovarian cancers (HBOC), hundreds of other studies exist that are open to any and all cancer patients. These less specific studies draw from the pool of hereditary cancer patients, leaving fewer possible participants for studies that are designed for people with hereditary cancer. More general advanced ovarian cancer clinical trials draw from women with and without 

 mutation carriers available to participate and complete studies that are specifically designed for mutation carriers. This predicament is also true for breast and other hereditary cancers and cancer-causing mutations.

Understanding how to find studies and volunteer for research participation is equally challenging. FORCE is committed to making research enrollment as easy as possible for our community. We have developed a research and clinical trial search tool that helps to match people facing hereditary cancer with research studies that are specifically designed to understand hereditary cancer. The database, which is updated regularly, includes studies on breast, ovarian, fallopian tube, prostate, melanoma, and pancreatic cancers. Studies can be searched by region, cancer site, phase of research, and trial type (prevention, detection, treatment, and quality of life).

To access the HBOC Research Search Tool and for more information, go to 