Assessment of Stakeholder Engagement in a Down Syndrome Research Study

Authors

Jeanhee Chung, Massachusetts General Hospital; Harvard Medical SchoolFollow
Ashwini Sarathy, Massachusetts General HospitalFollow
Yichuan Grace Hsieh, Massachusetts General Hospital; Harvard Medical SchoolFollow
Greg Estey, Massachusetts General HospitalFollow
Amy Torres, Massachusetts General HospitalFollow
Vasiliki Patsiogiannis, Massachusetts General HospitalFollow
Karen Donelan, Harvard Medical School; Massachusetts General HospitalFollow
Brian G. Skotko, Massachusetts General Hospital; Harvard Medical SchoolFollow

Publication Date

1-19-2021

Keywords

stakeholder engagement, Patient Engagement in Research Scale, PEIRS, participatory research, Down syndrome, intellectual disability

Abstract

There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited. Research studies involving these individuals provide the opportunity to test new methods of measurement of stakeholder engagement in research. We conducted a 3-year research study implementing and evaluating Down Syndrome Clinic to You, an online platform for caregivers of individuals with Down syndrome who do not have access to Down syndrome specialists. We established 3 key stakeholder groups — family caregivers, primary care physicians, and medical/scientific experts in the field — who were involved from grant-writing through preparation of the final report. To assess stakeholder engagement, we utilized the Patient Engagement in Research Scale, a validated instrument originally developed to evaluate patient engagement in arthritis research. Overall, results were suggestive of strong engagement levels by the key stakeholder groups. This study contributes to the limited available literature evaluating measures of stakeholder engagement in research.

Recommended Citation

Chung J, Sarathy A, Hsieh YG, Estey G, Torres A, Patsiogiannis V, Donelan K, Skotko BG. Assessment of stakeholder engagement in a Down syndrome research study. J Patient Cent Res Rev. 2021;8:64-7. doi: 10.17294/2330-0698.1777