Public and Private Perceptions: The Key to Developing a Regional Biorepository

Theoretical Background and research questions/hypothesis: Biorepositories and other types of tissue repositories increasingly fuel new research techniques in cancer and other diseases with significant impacts on human health (Fullerton et al., 2010; Gottweis et al., 2011; Winickoff et al., 2003). As biorepository development advances, it opens up a new field of study: that of determining what roles members of the public, patients, scientists, and clinicians play in supporting biorepositories. Several Seattle-area institutions are currently cooperating to found the NW BioTrust (NWBT), a tissue repository that solicits residual tissue specimens primarily from clinic patients. Questions exist regarding biorepositories’ abilities, including those of the NWBT, to a) encourage donation, b) increase science literacy, c) secure truly informed consent, and d) promote donor trust. My project aims to: 1) Identify and synthesize theoretical models and best-practices that inform communication and engagement strategies 2) Develop and test interventions to engage participants and build their trust and science literacy 3) Discover and integrate researcher preferences regarding communication strategies.

Methods: I have conducted a literature review spanning multiple disciplines, including social marketing, communications, technology, science communication, public relations, and biobanking/biorepositories to arrive at a critical meta-analysis on biorepository communications. I have conducted a second literature review on the concept of “trust” as it applies to tissue repositories, and will develop suggested ways to build and measure trust that are supported by the literature. I have also completed an initial research phase using observational, qualitative methods to study how clinical staff members interact with patients when: a) informing patients about proposed bio-resource research, and b) obtaining consent to collect biological specimens for research; I have also collected qualitative data during key informant interviews with clinicians and researchers to determine stakeholder needs that can inform the Northwest Biotrust’s development. Finally, I have completed materials testing, using a 2x2 study design to determine which media channels and strategies best meet stakeholder needs and result in the highest percentages of positive consent returns and the highest levels of materials understanding and institutional trust.

Results: Preliminary results indicate that researchers prefer transparency when searching for relevant biospecimens – they would like to see what biospecimens other researchers are using, in order to facilitate greater collaboration. Clinical patients donating their residual biospecimens to research endeavors prefer prefer minimal, clear communications surrounding donations with options to tailor their engagement levels via website interaction and attractive, single-page handouts.  Thank-you cards have been indicated as a way to demonstrate gratitude and build trust and an ongoing informational relationship.

Conclusions: This study explores patient communications, consenting, and researcher preferences to result in best-practices guidelines. Transparency, clarity, and concision, and the leveraging of pre-existing trust-based relationships (with front-desk staff, for example), are indicated.

Implications for research and/or practice: This study examines how an institution can build trust and science literacy among a patient population being asked to donate tissue specimens to research, and results in a framework approach adaptable for other biorepository projects that wish to engage their stakeholders.