Public Communication Strategies for a Biobanking Coalition

Background: Large-scale collections of tissue and data are becoming necessary to answer new translational research questions1,17,19. We know from an emerging literature that researchers and the research process greatly benefit from engaging the public1, 12,18. Though biorepositories are not always high-profile topics of discussion in public spheres2, it appears possible to secure wide public agreement to biorepository-driven research as long as repository donors trust the research entities involved1,3,4,14,18, feel they receive something in return (such as respect and research updates) 5,6,7,9,11, and feel that their personal information stays safe and secure8,14,16. Current regulatory practices have emphasized privacy and data security16  without attending to the dimensions of reciprocity and trust inherent in these public interests18.  While this is a new area, emerging data demonstrates that research repositories that adopt either a communicative or a participatory approach to informing and interacting with the public are most successful, with the participatory approach appearing preferable10,12.

Program background: Our practice-based project aims to design and facilitate unique bi-directional engagement between: a) a coalition of stakeholders in local research repositories and b) potential tissue donors. Our project builds on initial research conducted with community stakeholders that discovered researcher and donor priorities and barriers to communication. So far we have established alliances with more than 70 key stakeholders in the Pacific Northwest.

Evaluation Methods and Results: Using qualitative methods and current health communications theory, we will present the results of continuing to develop, assess, and implement communications tools including a website, informational hand-outs, a social network communications platform, opportunities for bi-directional dialogue and relationship-building, and a revised consent process. We will have tested our materials for effectiveness, clarity, sustainability, and perceived reciprocity using researcher and donor focus groups. We are collecting qualitative data on ease of implementation, and perceived advantages and disadvantages of a localized, coalition-led communications plan and communications materials. We are using qualitative methods, including theme-identification, coding, ethnography, and in-depth interview techniques to obtain feedback and process it.

Conclusions: Though our project primarily demonstrates key considerations during development of a biorepository coalition website and a consent form informed by participatory procedures15, it extends far beyond these elements to uncover lessons on sustainable clinical practice and to maintaining viable communication channels between all stake-holders, as informed by the literature to date1,14, 15,19. This project will be completed within three months, with the intention of presenting initial findings at the CDC National Conference on Health Communication, Marketing, and Media.

Implications for research and/or practice: This project continues dialogue threads established in the literature and attempts to follow best-practice recommendations. This project presents a vital chance to measure actual implementation against literature recommendations via measurable outcomes that can ground future biorepository attempts. This project depends on interdisciplinary research techniques and an intimate understanding of the translational research process; tools we develop here are expected to have broader applicability to other translational research efforts.