Document Type
Dissertation
Date of Degree
Fall 2024
Primary Advisor
Trudy Mallinson, PhD
Keywords
Clinical trial design, Patient engagement, Patient partner, Financial compensation
Abstract
Engaging patient partners in clinical trial design is a valuable process for making trials more patient-centric, resulting in greater patient participation in clinical trials, better generalizability of results and more outcomes of relevance to patients and providers. Patient partners are people with a disease or condition who are involved in clinical trial planning, conduct, and dissemination with clinical trial researchers. Patient engagement is the meaningful and collaborative interaction between patient partners and clinical trial researchers across the clinical trial lifecycle where research decision-making is guided by patient partners’ input about their lived experiences. Patient partners, clinical trial researchers, funders, and regulators recognize the value of patient engagement and have developed tools for encouraging patient engagement in industry and NIH-funded clinical trial design. However, a gap in guidance for fair compensation practices for patient engagement in clinical trial design remains, including guidance from NIH which is the largest public funder of research. This study aimed to interpret perspectives from patient partners and clinical trial researchers about compensation practices for patient engagement, analyze emerging themes to inform the creation of a knowledge dissemination tool for fair compensation practices for patient partners. The Knowledge-to-Action framework was used to guide the knowledge inquiry, synthesis, tool development and knowledge dissemination for this research. This research project first analyzed patient partners’ (n=11) and clinical trial researchers’ (n=12) perceptions about of fair compensation practices, obtained via semi-structured interviews, to describe factors for considering if and what compensation is fair. Five themes emerged from analysis and were then further analyzed and categorized to create a draft Points to Consider webpage for fair compensation practices for NIH-funded clinical trials. Perceptions from organizational administrators (n=6) about the usability and feasibility of the webpage were then sought via semi-structured interviews to inform a revised Points to Consider webpage. All data were analyzed using an interpretive phenomenological approach. The purpose of the Points to Consider webpage is to facilitate knowledge dissemination to researchers about fair compensation for patient engagement in clinical trial planning.
Recommended Citation
Culp, Michelle, "Fair Compensation for Patient Partners in Clinical Research: Perspectives and Practices" (2024). Doctor of Philosophy in Translational Health Sciences Dissertations. Paper 35.
https://hsrc.himmelfarb.gwu.edu/smhs_crl_dissertations/35
Open Access
1
Comments
©2024 by Michelle Culp. All rights reserved.