Summary of Results April, 2014 Peter Antal, Ph.D. Institute on Disability, UNH

NEGC 2013 Stakeholder Survey 50 out of 154 responded (32%) Represents a mix of perspectives, heavily weighted towards clinicians and public health Slight increases from the previous year in terms of understanding NEGC’s mission, the steps its taking, and overall progress. Overall, 78% agreed that the NEGC was making substantive progress on its mission. Lots of positive feedback on GEMSS and the ACA brief Still some confusion re: what groups different people serve on. Still many who are not reading the evaluation reports.

Strengths of the AC Collaboration (8) Commitment of Members (3) Diversity (8) Expertise (5) Leadership (1)

Challenges for the AC Distance / Expense (5) External factors adding to complications (3) Insufficient communication (2) Greater family involvement (1) Competing priorities (1) Mission drift (1) Lack of public understanding of genetics (1) None (1)

Collaborative Council Feedback “I don't get the sense that these are decision making meetings, but rather informational meetings. I don't usually feel very useful at them.” “Not quite so sure what its main objectives are other than providing a forum for information exchange. It does that very well.” “I relate most closely to Karen who is amazing. She is responsive, creative, patient, and always pleasant.”

Where did the NEGC have the most impact? GEMSS (12) Multiple (7) ACA Policy Brief (6) Collaboration (3) Consumer Involvement (3) Transition (3) Educational efforts (2) Other: CCHD, data collection, family health history, genetics brochures, pediatrics, QI projects

What could the NEGC be doing differently? Nothing (6) Collaboration (4): more stakeholders at annual mtg, public health programs, other RCs Target specific areas (4): regional programs, medical home & care planning, hereditary cancer risk mgmt, GEMSS support Awareness building (2): particularly among family practitioners and pediatricians Education: provision of CMEs on genetics to primary care providers Funding Support: enable integration of tools into practice More consistent work group meetings

What else should the NEGC engage in? Greater collaboration with partners (6), eg. public health, genetic councilors, NERGG, other large orgs via social media, state agencies, orgs supporting families and children More educational efforts (4), e.g. disseminating info to fps, pediatricans, and specialists, helping docs and patients understand genetic gtesting, expand GEMSS, explaining bioethics challenges in genetics for lay people, a facebook page with mini-posts on important topics related to genetics NEGC is doing a good job (4)

Other areas: insurance issues for genetic testing, mental health services for children with genetic conditions, newborn screening, outreach to young individuals living on their own, accessing hereditary cancer risk assessment for adults, addressing health disparities and increasing awareness of heredity on health and genetic services, information for prenatal clinicians What else should the NEGC engage in?

Other Feedback “Karen does a fantastic job keeping this project moving forward.” “Continue with working on Health Care Access issues in each state for all” “Thank you, Peter, for your patience and persistence!” “There is a spirit of cooperation with other groups like NERGG that is very gratifying and effective. My thanks and appreciation to everyone at NEGC, especially John, Monica, and Karen. You are great!”