Attendees:
Nicole Exe, University of Michigan
Kate Crow, St Mary Corwin Hospital
Heather Goltz, University of Houston-Downtown, VA, BCM
Karen Greendale, Consultant
Gail Marcus, North Carolina Public Health Genetics
James O’Leary, Genetic Alliance
Potential Timeline for Webinar Series:
Fall 2014—HBOC
Winter 2015 (January/February)— Lynch Syndrome
April 2015—FH
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Discussed issues with recruitment of Tier-I webinar planning subgroups
o Potential outreach: Send recruitment e-mail to entire Genomic Forum (newsletter piece
already went out)---clarify that subgroup members need not be experts in the specific
Tier-I application
o Subgroup leader roles: Planning agenda, leading calls, recruiting speakers, keeping
timelines
Briefly discussed outline/format of specific Tier-I application webinars
Karen Greendale reported on progress on the FH Tier-I application webinar
o Have identified some speakers, outline/format
o Will provide more information on next call
Notes from 03/10/14: Toby Citrin circulated his notes concerning a 3-part format for Tier-I
webinars (see below, taken from e-mail)
o Define the condition
 Risk factors
 How it presents
 Biological and genetic basis
o Recommendations for cascade screening
 Whom to screen
 When to screen
 How to screen
o Public health implementation
 Structure
 Costs and potential funding sources
 Partnerships – convening role
 Surveillance and Assessment
 Public and professional education
 Relationships to ongoing programs
o Group added that webinar should first address why the specific Tier-I application is
important and also assist public health professionals in terms of their understanding of
what they can do in terms of Tier-I, funding gaps, and “small steps” (i.e., implementing
programs with potential little funding). Additional discussion in terms of format that
these webinars should generate interest, but are not meant to be exhaustive.
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Group also suggested that Tier-I application webinars and related resources (i.e., web
links, reminder about original/general webinar, new OPHG website, clickable map)
should be made available to attendees.
Discussions about HBOC since it’s slated for the first slot in the webinar series:
o Michigan, Oregon, and Georgia state programs (e.g., bidirectional reporting, cascade
screening?)
o Potential speakers:
 Head GC training program at Emory: Cecilia Bellcross (developed BREST tool)
 Genetic counselors
 Oncologists
 Patient/Survivor groups (for stories), Sue Friedman (FORCE)---good/bad
experiences of public health and providers
 Nicole mentioned that having patient stories has been very powerful in
past such as Joanna Rudnick’s In the Family video
In discussing revising webinar format:
o Challenges/overcoming obstacles should be added to PH Implementation section (e.g.,
telemedicine)
o Suggestion to try and keep webinars grounded in the current state of the science as
opposed to future matters
o Revise first section (about the disease itself) to include the current state of technology
concerning the disease
Next call in late June (primary focus on HBOC, with some updates on other Tier-I webinars)