K. E. Ridley-Merriweather, K. J. Head, S. M. Younker, M. D. Evans, C. M. Moore, D. S. Lindsey, C. Y. Wu, S. E. Wiehe

The Komen Tissue Bank is the only biobank in the world that collects healthy breast tissue to be used as normal controls in breast cancer research.  However, the challenge is to collect tissue samples that could provide we appropriate representation of subpopulations.  This team implemented several approaches to see if they would be helpful in overcoming barriers to tissue collection among Hispanic/Latina and Asian women, ages 18 and older who could speak and understand English.

The KTB , a part of Indiana University, connected and disseminated information about the study via affinity groups, Email invitations and posting fliers throughout campus. Thirteen Hispanic women, Ages: 25-58 (Mexican, Spanish, PR, Colombian or Salvadoran decent). Seventeen Asian women, Ages: 21-48 (Chinese, Malaysian, Japanese, Indian, Thai, Korean, Indonesian).

Methods

The research team collaborated with several partners with experience in patient engagement, human-centered design research, participatory design and communication design to reach this population and identify the unique perspectives of Asian and Hispanic/Latina women regarding donating healthy breast tissue during the novel interactive 3-hour focus group session.

To engage fully with the focus group, interactive tools were used to allow for both verbal and written participation, that were sequenced to gradually work up to more demanding participation methods like group discussion.

Findings

• Knowledge is essential to motivation; there was a universal need for detailed information on tissue donation
• The importance of addressing the role of cultural influences on tissue donation
• There were differences in outlook and perceived connection to breast cancer among Hispanic/Latina and Asian women

Why is this study important?

• Enabled researchers to gain insights to better engage with Hispanic/Latina and Asian women
• Interactive, participatory focus groups are an important improvement upon the traditional focus group and fostered a deeper exploration of the perspectives of Hispanic/Latina and Asian women
• The novel methods used could prove to be a means of eliciting further information about motivations not only for the Hispanic/Latina and Asian women’s participation in tissue donation, but also in other types of preventive and clinical breast cancer research