lunes, 26 de enero de 2015

Communicating with Biobank Participants: Preferences for Receiving ... - PubMed - NCBI

Communicating with Biobank Participants: Preferences for Receiving ... - PubMed - NCBI

 2015 Jan 18. pii: cebp.1375.2014. [Epub ahead of print]

Communicating with Biobank Participants: Preferences for Receiving and Providing Updates to Researchers.


Background Research biobanks collect biological samples and health information. Previous work shows that biobank participants desire study updates, but preferences regarding the method or frequency of these communications have not been explored. Thus, we surveyed participants in a long-standing research biobank. Methods Eligible participants were drawn from a study of patients with personal/family history suggestive of Cowden syndrome, a poorly-recognized inherited cancer syndrome. Participants gave blood samples and access to medical records and received individual results but had no other study interactions. The biobank had 3618 participants at sampling. Survey eligibility included age >18 years, enrollment within the biobank's first five years, normal PTEN analysis, and contiguous United States address. Multivariate logistic regression analyses identified predictors of participant interest in internet-based vs. offline methods and methods allowing participant-researcher interaction vs. one-way communication. Independent variables were narrowed by independent Pearson correlations by cutoff p<0.2, with p<0.02 considered significant. Results Surveys were returned from 840/1267 (66%) eligible subjects. Most (97%) wanted study updates with 92% wanting updates at least once a year. Participants preferred paper (66%) or emailed (62%) newsletter methods with 95% selecting one of these. Older, less-educated, and lower-income respondents strongly preferred offline approaches (p<0.001). Most (93%) had no concerns about receiving updates and 97% were willing to provide health updates to researchers. Conclusion Most participants were comfortable receiving and providing updated information. Demographic factors predicted communication preferences. Impact Researchers should make plans for ongoing communication early in study development and funders should support the necessary infrastructure for these efforts.
Copyright © 2015, American Association for Cancer Research.

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