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.
authors.affiliation: Division of Clinical Cancer Genetics, City of Hope, 1500 E Duarte Rd, Duarte, CA, 91010, USA. cespenschied@coh.org
authors.forename: Carin R
authors.initials: CR
authors.lastname: Espenschied
authors.forename: Deborah J
authors.initials: DJ
authors.lastname: MacDonald
authors.forename: Julie O
authors.initials: JO
authors.lastname: Culver
authors.forename: Sharon
authors.initials: S
authors.lastname: Sand
authors.forename: Karen
authors.initials: K
authors.lastname: Hurley
authors.forename: Kimberly C
authors.initials: KC
authors.lastname: Banks
authors.forename: Jeffrey N
authors.initials: JN
authors.lastname: Weitzel
authors.forename: Kathleen R
authors.initials: KR
authors.lastname: Blazer
mesh_terms: D001943:Breast Neoplasms / Q000235:genetics* / Q000523:psychology*; D003226:Congresses as Topic / Q000458:organization & administration*; D005190:Family; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000458:organization & administration; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D006302:Health Services Research / Q000458:organization & administration*; D006801:Humans; D020380:Needs Assessment; D015397:Program Evaluation; D018570:Risk Assessment