Full Stakeholder Survey
Spring 2019

Executive Summary

In May of 2019, the New England Regional Genetics Network (NERGN) sent an email invitation to 410 stakeholders asking that they complete the Annual Survey. Stakeholders were sent an additional follow-up email requesting their participation. Stakeholders include, but are not limited to, Steering Committee members, community partners, advocates, consumers, and providers. The Annual Survey sought to gain further insight into stakeholder involvement, perceptions about NERGN’s adherence to mission, effectiveness of programming, and areas for improvement.

Stakeholders identified to take part in this survey had varying degrees of participation in NERGN activities. For the purposes of this analysis, respondents’ answers have been split into two groups: consumer/ family member, and professional (primary care, researcher, public health, provider). It should be noted that almost half of all respondents indicated they were a part of multiple groups i.e. consumer, advocate, and genetic service provider. Of those who responded, seven were Steering Committee members, 16 identified as consumers or family members, and 23 were identified as professional. Not all respondents answered all questions.

Overall, responses from the Stakeholder Survey suggest that NERGN is progressing to achieve the goals set forth by the mission. Notably, individuals who were more involved in NERGN’s work over the last year were more likely to be satisfied with the progress made, have more ideas for improvement, and discuss more thoroughly any challenges they experienced within their own work.

Interestingly, within the two groups of respondents, the depth and breadth of consumers/family member responses surpassed those provided by the professional group. This factor could be the result of NERGN’s increased involvement with Family Voices organizations throughout FY2018. The survey also suggests that NERGN has a dedicated and active Steering Committee. Half of all Steering Committee members responded to the survey and within the survey, members inquired about other opportunities to become further involved in the work.

Stakeholders indicated that NERGN’s highest achievements of the year were in the education and training it provided. Another achievement was in collaboration among partners, particularly with Family Voices organizations. Throughout the survey, stakeholders identified the importance of NERGN’s role as a convener; this idea was discussed in both NERGN’s existing and future work within the New England states among organizations, with families, and service providers. Respondents to the survey indicated that NERGN’s biggest area for continued growth is within the development and dissemination of existing resources and materials. Other areas for improvement included on-going outreach, collaboration, and convening between stakeholder groups.