2023 ACMG Annual Clinical Genetics Meeting Digital Edition: Poster Gallery-Assessing the Collaborative Relationships Among Diverse Stakeholders Working to Expand Access to Genetic Services in Puerto Rico

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The document focuses on the collaborative relationships among diverse stakeholders working to expand access to genetic services in Puerto Rico within the New York Mid-Atlantic Caribbean (NYMAC) Regional Genetics Network. The purpose of the study is to assess the participant-reported quality of relationships among members of the Puerto Rico NYMAC team. <br /><br />The researchers used the 360° Engagement Assessment to evaluate satisfaction with roles, influence on team decisions, and teamwork engagement among team members. The assessment was adapted to be culturally applicable and sent to 45 team members via email. The respondents represented various stakeholders, including healthcare providers, academia, health departments, advocates, patients and family members, NYMAC staff, and other interested parties. <br /><br />Key findings suggest that a majority of respondents had a clear understanding of their roles on the team and felt successful in their roles. Most respondents also had a high or moderate level of understanding of NYMAC's goals in Puerto Rico. NYMAC stakeholders were reported to be very or extremely influential in decisions related to NYMAC's work. However, some respondents felt that advocates and patient or family members should have more influence on the team's decisions. Overall, there were high levels of trust among all team members.<br /><br />The document concludes that the Puerto Rico NYMAC team members feel successful, have an appropriate level of influence, and are well engaged in all aspects of the team's work. The authors plan to continue administering the assessment biannually over the next two years to further enhance relationships among stakeholders and the NYMAC team, and to expand the influence of advocates, patients, and family members. The study is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services.

Asset Subtitle

Co-Author - Oksana Kutsa, MS; Co-Author - Alissa B. Terry, ScM, CGC; Presenting Author - Joann Bodurtha, MPH, MD, FACMG, FAAP; Co-Author - Michele Caggana, ScD, FACMG; Co-Author - Carlos D. Gonzalez, MMS; Co-Author - Enrique Lopez, MS, CGC; Co-Author - Maria I. Frangenberg, BA; Co-Author - Coralaidee J. Burgos, FR; Co-Author - Norma J. Arciniegas-Medina, MD; Co-Author - Amanda Bergner, MS, CGC; Co-Author - Melissa Raspa, PhD;

Meta Tag

Genetic Testing

Co-Author Oksana Kutsa, MS

Co-Author Alissa B. Terry, ScM, CGC

Co-Author Michele Caggana, ScD, FACMG

Co-Author Carlos D. Gonzalez, MMS

Co-Author Enrique Lopez, MS, CGC

Co-Author Maria I. Frangenberg, BA

Co-Author Coralaidee J. Burgos, FR

Co-Author Norma J. Arciniegas-Medina, MD

Co-Author Amanda Bergner, MS, CGC

Co-Author Melissa Raspa, PhD

Presenting Author Joann Bodurtha, MPH, MD, FACMG, FAAP

Keywords

collaborative relationships

diverse stakeholders

access to genetic services

Puerto Rico

NYMAC Regional Genetics Network

participant-reported quality

360° Engagement Assessment

satisfaction with roles

teamwork engagement

influence on team's decisions