Evolution of a research team: the patient-partner perspective

SESSION TITLE: Quality Improvement Abstract PostersSESSION TYPE: Original Investigation PostersPRESENTED ON: 10/18/2022 01:30 pm - 02:30 pmPURPOSE: Engaging patients as research partners in clinical trials is an evolving concept requiring continued exploration. Patient Partners (PPs) can offer unique perspectives and valuable knowledge to the research team, especially those from underrepresented racial and ethnic backgrounds, such as African American/Black (AA/B) and Hispanic/Latinx (H/L) PPs. However, little is known about what this collaboration means for PPs. The purpose of this project was to summarize PP’s experience and bring more insight on how the PP-investigator relationship is built and evolves.METHODS: Opinions and observations from 15 PPs (10 AA/B and 5 H/L) in the PREPARE clinical trial of self-identified AA/B and H/L adults with asthma were collected through qualitative interviews by the American Institutes for Research (AIR). Using interview questions developed by PREPARE PPs and used by interviewers to be able to summarize the information needed to understand the perspective and experience of the PPs. Open-ended responses were obtained, and summarized into overall themes related to motivation, challenges and how they were overcome, and the personal and professional impact of the role.RESULTS: PP indicated that their motivation to get involved in research was to learn more about asthma impact and management, in addition to helping researchers understand how it feels to live with a chronic condition. They identified specific challenges, including building trust with investigators and confidence to participate as PPs. They welcomed developing a bond and relationship between PPs and investigators. PP noted their role changing throughout the trial, with an increase in responsibilities and information exchange was elevated and performed in a novel way. For example, PPs were included in decision-making with every decision requiring their counsel. This was done by becoming part of the executive and publication committees, in addition to monthly meetings. This experience brought personal and professional growth to the PPs, empowering the PPs to advocate for AA/B and HL communities and help reduce health disparities.CONCLUSIONS: Including PPs as active members of a research team can lead to increased awareness among investigators about the perspective of the patient burden of living with asthma and personal growth among PPs.CLINICAL IMPLICATIONS: We hope to improve patient care by advocating for the involvement of patients as Patient Advisors in clinical research studies. Patient Advisors will help to move toward a more inclusive, collaborative and impactful research experience.DISCLOSURES: No relevant relationships by Graciela CastilloNo relevant relationships by Alex Colonno disclosure on file for Aracelis Diaz;no disclosure on file for Bridget Hickson;No relevant relationships by Margie LorenziNo relevant relationships by Suzanne Madisonno disclosure on file for Kathy Monteiro;No relevant relationships by Wilfredo Morales Cosmeno disclosure on file for Alexander Muniz;no disclosure on file for Addie Perez;No relevant relationships by Richard Redondono disclosure on file for Dennis Reid;no disclosure on file for Janet Robles;no disclosure on file for Marsha Santiago;no disclosure on file for Opal Thompson;no disclosure on file for Cristian Valenzuela;no disclosure on file for Joyce Wade;no disclosure on file for Mary White; SESSION TITLE: Quality Improvement Abstract Posters SESSION TYPE: Original Investigation Posters PRESENTED ON: 10/18/2022 01:30 pm - 02:30 pm PURPOSE: Engaging patients as research partners in clinical trials is an evolving concept requiring continued exploration. Patient Partners (PPs) can offer unique perspectives and valuable knowledge to the research team, especially those from underrepresented racial and ethnic backgrounds, such as African American/Black (AA/B) and Hispanic/Latinx (H/L) PPs. However, little is known about what this collaboration means for PPs. The purpose of this project was to summarize PP’s experience and bring more insight on how the PP-investigator relationship is built and evolves. METHODS: Opinions and observations from 15 PPs (10 AA/B and 5 H/L) in the PREPARE clinical trial of self-identified AA/B and H/L adults with asthma were collected through qualitative interviews by the American Institutes for Research (AIR). Using interview questions developed by PREPARE PPs and used by interviewers to be able to summarize the information needed to understand the perspective and experience of the PPs. Open-ended responses were obtained, and summarized into overall themes related to motivation, challenges and how they were overcome, and the personal and professional impact of the role. RESULTS: PP indicated that their motivation to get involved in research was to learn more about asthma impact and management, in addition to helping researchers understand how it feels to live with a chronic condition. They identified specific challenges, including building trust with investigators and confidence to participate as PPs. They welcomed developing a bond and relationship between PPs and investigators. PP noted their role changing throughout the trial, with an increase in responsibilities and information exchange was elevated and performed in a novel way. For example, PPs were included in decision-making with every decision requiring their counsel. This was done by becoming part of the executive and publication committees, in addition to monthly meetings. This experience brought personal and professional growth to the PPs, empowering the PPs to advocate for AA/B and HL communities and help reduce health disparities. CONCLUSIONS: Including PPs as active members of a research team can lead to increased awareness among investigators about the perspective of the patient burden of living with asthma and personal growth among PPs. CLINICAL IMPLICATIONS: We hope to improve patient care by advocating for the involvement of patients as Patient Advisors in clinical research studies. Patient Advisors will help to move toward a more inclusive, collaborative and impactful research experience. DISCLOSURES: No relevant relationships by Graciela Castillo No relevant relationships by Alex Colon no disclosure on file for Aracelis Diaz; no disclosure on file for Bridget Hickson; No relevant relationships by Margie Lorenzi No relevant relationships by Suzanne Madison no disclosure on file for Kathy Monteiro; No relevant relationships by Wilfredo Morales Cosme no disclosure on file for Alexander Muniz; no disclosure on file for Addie Perez; No relevant relationships by Richard Redondo no disclosure on file for Dennis Reid; no disclosure on file for Janet Robles; no disclosure on file for Marsha Santiago; no disclosure on file for Opal Thompson; no disclosure on file for Cristian Valenzuela; no disclosure on file for Joyce Wade; no disclosure on file for Mary White