Involving Latina/o parents in patient‐centered outcomes research: Contributions to research study design, implementation and outcomes

Abstract

BackgroundComparative effectiveness research (CER) is supported by policymakers as a way to provide service providers and patients with evidence‐based information to make better health‐care decisions and ultimately improve services for patients. However, Latina/o patients are rarely involved as study advisors, and there is a lack of documentation on how their voices contribute to the research process when they are included as collaborators.ObjectivesThe purpose of this article was to contribute to the literature by presenting concrete contributions of Latina/o parent involvement to study design, implementation and outcomes in the context of a CER study called Padres Efectivos (Parent Activation).MethodsResearchers facilitated a collaborative relationship with parents by establishing a mentor parent group. The contributions of parent involvement in the following stages of the research process are described: (i) proposal development, (ii) implementation of protocols, (iii) analysis plan and (iv) dissemination of results.ResultsMentor parents’ contributions helped tailor the content of the intervention to their needs during proposal, increased recruitment, validated the main outcome measure and added two important outcome measures, emphasized the importance of controlling for novice treatment status and developed innovative dissemination strategies.ConclusionsMentor parents’ guidance to the researchers has contributed to reaching recruitment goals, strengthened the study protocol, expanded findings, supported broad ownership of study implications and enriched the overall study data collection efforts. These findings can inform future research efforts seeking an active Latino parent collaboration and the timely incorporation of parent voices in each phase of the research process.

Challenges and promising solutions to engaging patients in healthcare implementation in the United States: an environmental scan

“…Perez Jolles 2017 (Literature article) [43] For children's mental health efforts, a parents advisory group met every three months provided input on implementation research protocols, implementation decisions in the context of a study, interpreted findings, and suggested next steps.…”

“…• Meetings held only as often as needed, no more [56,58] • Limit to what is possible and do it well [43] • For lack of education, use multiple teaching methods to enhance knowledge (e.g., centralized trainer, online learning) [41] 4) Difficulty retaining patients over time in implementation effort Implementers found that if they were to engage patients representative of patients affected by a particular health condition or treatment (i.e., overcoming challenge #1), they were then faced with how to retain those patients because of limited capacity demanded by the very health condition or treatment under study. One mentioned experiencing "tremendous turnover. "…”

Original Abstracts from the 15th Annual Meeting of ISMPP

“…Research design and methods: Online portals to 14 ICMJE member journals were accessed to review how clearly data sharing policies are communicated to contributors and how this is balanced by journal's Open-access model [3][4][5][6][7][8][9][10][11][12][13][14][15][16] . Results: Nine of 14 member journals communicated data sharing requirements on their websites.…”

Community Collaboration in Public Health Genetic Literacy: Co-Designing Educational Resources for Equitable Genomics Research and Practice

“…Numerous studies have found that multilingual and culturally responsive educational resources could build genetic health literacy and awareness, and subsequently improve participation in research [12][13][14][15]. Research has shown the profound impact of fostering trust-based relationships and bidirectional communication, emphasizing the inclusion of communities historically marginalized and exploited by biomedical research, notably Black and African American people who have been systematically excluded from the advances made with their contributions [16][17][18][19][20][21]. This inclusive approach has been shown to enhance interest and participation in research, particularly when intended beneficiaries are engaged throughout the development process [22][23][24][25][26].…”