Closing the loop: Action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs Journal Article


Authors: Espenschied, C. R.; MacDonald, D. J.; Culver, J. O.; Sand, S.; Hurley, K.; Banks, K. C.; Weitzel, J. N.; Blazer, K. R.
Article Title: Closing the loop: Action research in a multimodal hereditary cancer patient conference is an effective tool to assess and address patient needs
Abstract: 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. © Springer Science+Business Media, LLC 2012.
Keywords: genetics; organization and management; genetic predisposition to disease; congresses as topic; breast neoplasms; risk assessment; health care quality; tumor suppressor gene; psychological aspect; program evaluation; genes, brca1; genes, brca2; breast tumor; organization; health services research; genetic predisposition; brca; needs assessment; genetic counseling; family; patient conference; patient experiences; patient needs
Journal Title: Journal of Cancer Education
Volume: 27
Issue: 3
ISSN: 0885-8195
Publisher: Springer  
Date Published: 2012-06-01
Start Page: 467
End Page: 477
Language: English
DOI: 10.1007/s13187-012-0373-9
PROVIDER: scopus
PUBMED: 22610836
PMCID: PMC3540105
DOI/URL:
Notes: --- - "Export Date: 2 November 2012" - "CODEN: JCEDE" - "Source: Scopus"
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  1. Karen E Hurley
    45 Hurley