2023 American Academy of Neurology Abstract Website

Objective:

To bridge gaps in scientific knowledge among an underserved community by utilizing stakeholder engagement in Parkinson’s disease (PD) research.

Background:

Native Hawaiians (NH) are affected by higher rates of morbidity and mortality, than the overall population in Hawaiʻi. Distrust amongst the NH community continues to be a barrier to research participation due to a history of unethical research.^1,2 Stakeholder engagement in the research process is an approach that ensures the relevance and translation of research to real world practice. Engagement builds trust and promotes appropriate inclusivity among diverse communities.³ Recently there has been increasing attention to racial disparities of PD globally.⁴ However, there is limited evidence on the best framework for multi-stakeholder engagement of underrepresented patient populations⁵ in PD research.⁶

Design/Methods:

We adapted a community-based participatory research (CBPR) framework to promote engagement of NHs for a prospective pilot PD research study. A stakeholder advisory group (SAG) was formed comprising of individuals affected by PD, medical providers, and members from key local community groups. The majority of the stakeholders identified as NH (n = 7). Stakeholders included individuals with direct connections to PD (n = 9) and no direct connection to PD (n = 4).

Results:

Key objectives were identified: 1) partner with stakeholders who have established trust in the community 2) identify opportunities to educate the community and participants 3) create a comfortable environment for the participant. This study is ongoing; based on these objectives we will adapt the research process, follow NH recruitment and solicit SAG member’s feedback upon completion.

Conclusions:

Adapting a CBPR framework to include representative of the NH community and PD community into a SAG adds diversity to the SAG. Stakeholder input promotes engagement in underserved communities with low rates of research participation. This framework has the potential to be translated toward other minority communities to increase PD research participation.