Full Stakeholder Survey
June 2020

Executive Summary

In May of 2020, the New England Regional Genetics Network (NERGN) sent an email invitation to 383 stakeholders asking that they complete the Annual Survey. Stakeholders were sent two follow-up emails requesting their participation. Stakeholders include, but are not limited to, Advisory 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. In all, 47 responses were collected, or about 12% of those asked.

Respondents who were more familiar with the network agreed that NERGN advanced its mission over the year and were more likely to comment on this progress and offer suggestions for improvement. They were also more likely to participate in multiple NERGN activities and be satisfied with NERGN communication and relationship building among partners. Those who were not as acquainted with NEGRN were less likely to provide feedback overall.

Stakeholders indicated that NERGN’s highest achievements of the year were in the education and training it provided especially via webinars, telehealth, and the GEMSS website. Another achievement was in collaboration among partners, particularly with Family Voices (FVs) and Family-to-Family Health Information Centers (F2Fs). Throughout the survey, stakeholders identified the importance of NERGN’s role as a convener for organizations, families, and service providers, especially during the COVID-19 pandemic. 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 include ongoing outreach, collaboration, and convening stakeholder groups. Respondents were interested in seeing increased involvement from new and existing partners and the formation of a more representative Advisory Committee.

*In contrast to previous years, NERGN reached out to national partners in addition to local ones to complete the survey, effectively doubling the survey pool size. While this helped us to gather additional perspectives on our work, it had a negative impact on our survey response rate.

Previous year:

Full Stakeholder Survey, Spring 2019