Esquenazi-Karonika Shari, Mathews Patenne D, Wood Marion J, Mudumbi Praveen M, Linton Janelle, Briscoe Jasmine, Seibert Elle, Coombs K, Laynor Gregory, Katz Stuart D, Chung Alicia
Department of Population Health, NYU Grossman School of Medicine, 550 1st Avenue Medical Science Building, MSB 5-204, New York, NY, 10016, USA.
RECOVER Patient, Caregiver, or Caregiver Representative, New York, NY, USA.
BMC Health Serv Res. 2025 Jul 3;25(1):919. doi: 10.1186/s12913-025-12914-3.
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.
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.
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.
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.
The online version contains supplementary material available at 10.1186/s12913-025-12914-3.
让患者、护理人员和社区成员参与科学研究对于以患者为中心的医疗至关重要。患者的生活经历可以提出新的关注领域，这些领域可能以前未被考虑过；确保对潜在敏感话题进行深思熟虑的探讨；有助于对研究结果的解读，并确定未来的研究方向。此外，让他们参与手稿的起草可以确保研究结果能够转化为实际应用。为实现这一目标，“研究 COVID 以促进康复”（RECOVER）联盟开发了一种代表性作者制度，用于撰写报告 RECOVER 数据的科学手稿。本文描述了一个质量改进（QI）项目，该项目旨在识别系统优势和改进机会。
在代表性作者制度实施约一年后，向 RECOVER 的代表性作者发放了一份在线 QI 调查问卷。该调查聚焦于几个关键方面，包括作者身份认定过程的清晰度、培训机会、匹配过程、写作团队内部的沟通，以及代表性参与对研究质量和适用性的感知影响。调查还探讨了参与者对报酬、支持以及参与该系统的满意度，以及改进领域。
该调查发送给了 49 位代表性作者，有 17 位受访者（35%）回复。大多数受访者报告了积极的经历，强调根据他们的专业知识与手稿进行了有效的匹配，以及他们的参与对研究结果产生了积极影响。此外，参与者认为纳入不同声音增强了研究对临床实践的相关性。确定了几个需要改进的领域，包括写作团队内部的沟通挑战、手稿定向会议的效用以及报酬的公平性。受访者还表示需要更多的培训机会和后勤支持。
RECOVER 的代表性作者制度在促进合作和提高科学研究的包容性方面是有效的。调查结果表明，在沟通、培训和报酬方面存在一些后勤方面的变化，可以改善所有合作者的体验。基于这些发现，我们计划实施变革以提高认识、理解和合作。还需要开展更多工作，征求研究人员和行政人员的反馈，以更全面地了解该系统。
在线版本包含可在 10.1186/s12913 - 025 - 12914 - 3 获取的补充材料。
