Study newsletters, community and ethics advisory boards, and focus group discussions provide ongoing feedback for a large biobank

Abstract

The Personalized Medicine Research Project (PMRP) is a population-based biobank with more than 20,000 adult participants in central Wisconsin. A Community Advisory Group (CAG) and Ethics and Security Advisory Board (ESAB) provide ongoing feedback. In addition, the study newsletter is used as a two-way communication tool with study participants. The aim of this study was to assess and compare feedback received from these communication/consultation strategies with results from focus group discussions in relation to protocol changes. In summer 2009, enrollee focus groups were held addressing these topics: newsletter format, readability, and content of three articles written to solicit PMRP subject feedback. The CAG and ESAB jointly reviewed focus group results, discussed protocol changes to access residual blood samples, and made recommendations about the general communication approach. Nearly everyone in three focus groups stated that they wanted more information about PMRP. No focus group participant said that accessing stored samples would have changed their enrollment decision. Most said they wanted to be informed directly about changes affecting their original consent. For minimal-risk PMRP protocol changes, the community, CAG, and ESAB were comfortable with an opt-out model because of the initial broad consent. The planned duration of the biobank extends for decades; therefore regular, ongoing communication to enrollees is necessary to maintain awareness and trust, especially relating to protocol changes reflecting evolving science. The multi-faceted approach to communication including newsletters, external advisory boards, and focus group discussions has been successful for the PMRP biobank and may be a model for others to consider.

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