Closing the Loop: Action Research in a Multimodal Hereditary Cancer Patient Conference is an Effective Tool to Assess and Address Patient Needs
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This paper describes the use of action research in a patient conference to provide updated hereditary cancer information, explore patient and family member needs and experiences related to genetic cancer risk assessment (GCRA), elicit feedback on how to improve the GCRA process, and inform future research efforts. Invitees completed GCRA at City of Hope or collaborating facilities and had a BRCA mutation or a strong personal or family history of breast cancer. Action research activities were facilitated by surveys, round table discussions, and reflection time to engage participants, faculty, and researchers in multiple cycles of reciprocal feedback. The multimodal action research design effectively engaged conference participants to share their experiences, needs, and ideas for improvements to the GCRA process. Participants indicated that they highly valued the information and resources provided and desired similar future conferences. The use of action research in a patient conference is an innovative and effective approach to provide health education, elicit experiences, identify and help address needs of high-risk patients and their family members, and generate research hypotheses. Insights gained yielded valuable feedback to inform clinical care, future health services research, and continuing medical education activities. These methods may also be effective in other practice settings.
KeywordsBRCA Patient conference Patient needs Patient experiences Genetic counseling
This conference was funded by grants provided by the Regents of the University of California, Breast Cancer Research Program and Susan G. Komen for the Cure, Los Angeles County. The City of Hope Clinical Cancer Genetics Community Research Network is supported by Award Number RC4 CA153828 (PI: J. Weitzel) from the National Cancer Institute and the Office of the Director, National Institutes of Health. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Cancer Institute or the National Institutes of Health. We would like to acknowledge the conference faculty, Dr. James Anderson, Karen Clark, Dr. Katherine Henderson, Kory Jasperson, Matthew Loscalzo, Joanna Morales, Dr. Joanne Mortimer, Dr. Lalit Vora, and Dr. Mark Wakabayashi, for their contributions of time and expertise. We would also like to thank Shawntel Payton and Tracy Sulkin for assistance with manuscript preparation, Gloria Nunez for help with conference coordination, and the rest of the Division of Clinical Cancer Genetics for providing logistical support.
Conflict of Interest
The authors state that they have no financial relationship with the funders.
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