Quality improvement of a community-engaged authorship system: Lessons learned from the RECOVER Initiative
Esquenazi-Karonika, S; Mathews, PD; Wood, MJ; et al., BMC Health Services Research
Published
July 2025
Journal
BMC Health Services Research
Abstract
Background: Inclusion of patients, caregivers, and community members in scientific research should be essential for patient-centered care. Patients’ lived experiences can propose new areas of focus that may not have previously been considered, ensure that potentially sensitive topics are addressed thoughtfully, contribute to the interpretation of findings, and identify future directions of research. Further, their inclusion in the drafting of manuscripts can ensure that research findings are translatable to real-world practice. To achieve this goal, the Researching COVID to Enhance Recovery (RECOVER) consortium developed a Representative Authorship system for development of scientific manuscripts that report RECOVER data. This paper describes a Quality Improvement (QI) project that was conducted to identify system strengths and improvement opportunities.
Methods: An online QI survey was distributed to RECOVER’s Representative Authors about a year into the implementation of the Representative Authorship System. The survey focused on several key aspects, including the clarity regarding the authorship process, training opportunities, the matching process, communication within writing groups, and the perceived impact of the representative engagement on the quality and applicability of research. The survey also explored participants’ satisfaction with compensation, support, and involvement in the system, as well as areas for improvement.
Results: The survey was sent to 49 representative authors with 17 respondents (35%). Most respondents reported positive experiences, highlighting the effective matching to manuscripts based on their expertise and the perceived positive impact of their involvement on research outcomes. Additionally, participants felt that including diverse voices enhanced the relevance of research for clinical practice. Several areas for improvement were identified, including communication challenges within writing groups, the utility of manuscript orientation calls, and the fairness of compensation. Respondents also indicated a need for more training opportunities and logistical support.
Conclusions: RECOVER’s Representative Authorship system is effective in fostering collaboration and improving the inclusivity of scientific research. The survey findings indicate that there are logistical changes around communication, training, and compensation that could enhance the experience for all collaborators. Based on these findings, we plan to implement changes to improve awareness, understanding, and collaboration. Additional work is needed to solicit feedback from investigators and administrative staff to obtain a more holistic understanding of the system.
Supplementary information: The online version contains supplementary material available at 10.1186/s12913-025-12914-3.
Authors
Shari Esquenazi-Karonika, Patenne D Mathews, Marion J Wood, Praveen M Mudumbi, Janelle Linton, Jasmine Briscoe, Elle Seibert, K Coombs, Gregory Laynor, Stuart D Katz, Alicia Chung
Keywords
Community engagement; Community-Based participatory research; Patient participation; quality improvement
Short Summary
This RECOVER study explored how the experiences of people who have had COVID-19, their caregivers, and community members can make sure patients’ voices are heard in Long COVID research. In the RECOVER Initiative, these people are called Representatives. RECOVER created a system called Representative Authorship to let Representatives join writing groups and contribute to writing scientific papers about RECOVER research. Representatives’ experiences help researchers focus on what matters most to patients, make findings easier to understand, and connect the research to real-world care. In this study, researchers surveyed RECOVER Representatives about what worked well and what could be improved in the Representative Authorship system. They found that most Representatives had positive experiences and felt that they were matched with the right scientific papers based on their background and experiences. Representatives stated that having different points of view can keep research meaningful for doctors treating patients with Long COVID. The survey also highlighted areas to improve. When including Representatives in manuscripts, researchers should communicate clearly, train new authors, and make sure that people are paid fairly for their time. The RECOVER Initiative learned that by considering the viewpoints of Representatives, they can improve their writing system and write papers that reflect the needs and experiences of the larger Long COVID community.