Supplementary Appendix B. Recommendations for using Facebook for public health communication and for communicating with the public on newborn screening, bloodspot retention and biobanking

Recommendations

To stimulate Facebook engagement

·  Sponsor posts with ad dollars to tailor and deliver content to specific audiences (e.g., target by age group, interests, location, etc.) to dramatically increase reach and accessibility of information that needs to be pushed out

·  Allocate time and money to engagement efforts

·  Include multi-media content (e.g., videos, graphics, photographs) and include both text and visual content in all posts

·  Experiment with, and pilot test messages, ad types, and audiences

·  Prepare and include a variety of non-stock photographs to increase views and impact of content

·  Encourage low-level engagement (e.g., likes) that may stimulate higher-level engagement (e.g., discussion)

To stimulate and moderate discussion

·  Prepare moderator (e.g., subject matter expertise, pilot testing, and experience with other forms of public engagement can help the moderator anticipate user needs and concerns)

·  Employ a dedicated moderator with sufficient expertise in the topic area

·  Actively moderate discussion as questions and comments arise

·  Validate and acknowledge diverse opinion

·  Prompt users to comment, engage with content and submit user-generated content

·  Incorporate real public perspectives in distributed content

·  Create and adapt content to respond to apparent and arising needs of users

·  Engage directly with users

·  Maintain professional but personable tone

To communicate on biobanking

·  Include information about and examples of specific research uses; participants are interested in how their DBS has been, or may be used

·  Explain why and how DBS are de-identified

·  Note that participants prefer to be asked to participate in biobanks

·  Note that attitudes about government and privacy may influence support and opposition to biobank

·  Make consent information as clear and accessible as possible

·  Anticipate some participants’ sensitivity about sharing of “DNA” in particular

·  Distinguish DBS from cord blood

·  Push information out to populations not easily informed about biobanking

·  Use social media with other forms of engagement to increase and broaden reach, open channels of two-way communication, and consider public input