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Argues for meaningful patient inclusion as research partners, shifting clinical and research practice from paternalistic “about” models to collaborative “with” approaches. Emphasizes reflective listening and calls for greater representation of patient perspectives while addressing journal, power-dynamics, and methodological barriers such as authorship guidance and submission challenges.",{"@graph":69,"@context":122},[70,84,105],{"@type":71,"itemListElement":72},"BreadcrumbList",[73,77,79,82],{"item":74,"name":75,"@type":76,"position":8},"https://docshare.wps.com","Home","ListItem",{"item":78,"name":9,"@type":76,"position":14},"https://docshare.wps.com/document/",{"item":80,"name":35,"@type":76,"position":81},"https://docshare.wps.com/document/healthcare/",3,{"item":83,"name":65,"@type":76,"position":19},"https://docshare.wps.com/document/nothing-about-us-without-us-publishing-the-patient-voice/459631/",{"url":83,"name":65,"@type":85,"image":86,"author":91,"headline":65,"publisher":94,"fileFormat":97,"inLanguage":63,"description":67,"dateModified":98,"datePublished":99,"encodingFormat":97,"isAccessibleForFree":100,"interactionStatistic":101},"DigitalDocument",{"url":87,"@type":88,"width":89,"height":90},"https://docshare.wps.com/thumbnails/nothing-about-us-without-us-publishing-the-patient-voice/459631.png","ImageObject",300,407,{"name":92,"@type":93},"Alex Sinclair","Person",{"url":74,"name":95,"@type":96},"DocShare","Organization","application/pdf","2026-11-07","2026-09-30",true,{"@type":102,"interactionType":103,"userInteractionCount":81},"InteractionCounter",{"@type":104},"ViewAction",{"@type":106,"mainEntity":107},"FAQPage",[108,114,118],{"name":109,"@type":110,"acceptedAnswer":111},"Why does the author emphasize patient inclusion in PCORnet®?","Question",{"text":112,"@type":113},"Because patient-centeredness requires clinicians and research teams to listen and partner with patients in both creating and disseminating research, improving health success and outcomes.","Answer",{"name":115,"@type":110,"acceptedAnswer":116},"How does the author describe the shift in research models?",{"text":117,"@type":113},"She contrasts older models that research “about” patients as subjects with newer approaches that create research “with” patients as partners across grant writing, protocol development, implementation, and interpretation.",{"name":119,"@type":110,"acceptedAnswer":120},"What challenges does the author identify for publishing the patient voice?",{"text":121,"@type":113},"She notes limited venues for hosting patient and community voices, academic power dynamics and prestige tiering, and methodological gaps such as guidance on authorship and difficulties with submission requirements.","https://schema.org",{"og:url":83,"og:type":124,"og:title":65,"og:site_name":95,"og:description":67},"article",{"robots":126,"canonical":83},"index,follow",{"doc_id":128,"site_id":62},459631,1790756468,{"code":4,"msg":5,"data":131},{"doc_id":128,"user_id":132,"nickname":92,"user_avatar":133,"doc_module":4,"category_id":34,"category_name":35,"doc_title":65,"doc_description":67,"doc_content":134,"file_id":135,"file_url":136,"file_type":137,"file_size":138,"view_count":81,"is_deleted":4,"is_public":8,"is_downloadable":8,"audit_status":8,"page_count":14,"language":139,"language_code":63,"site_id":62,"html_lang":63,"table_of_contents":140,"faqs":141,"seo_title":142,"seo_description":67,"update_tm":129,"read_time":24,"preview_page_count":4},1099523882182,"https://ap-avatar.wpscdn.com/davatar_6f874abed73319feea01a86fa6f0fab8","COMMENTARY  \nNothing About Us Without Us On Publishing the Patient Voice  \nJennifer Tjia, MD, MSCE  \n(Med Care 2026;64:S172–S173)  \nIt has been a pleasure and privilege to work with the  \nPCORnet leadership to shepherd along this special supplement to Medical Care focusing on PCORnet® . It is with gratitude that I have learned about the tremendous resources that PCORnet provides to researchers and the many contributions that have been made to the medical and health services literature as a result. I hope that you, the reader, find this volume a valuable and inspiring resource.  \nI was especially moved to work with the Patient Centered Outcomes Research Institute (PCORI) leadership and staff because of their commitment to patient inclusion, both in the research generation process and the dissemination process. Clinicians know that the importance of patient-centeredness has evolved tremendously in the last decade away from the archaic model of paternalism. Clinicians are now called to listen to their patients and formulate actionable treatment plans in partnership with their patients to optimize the conditions for patient success, better health, and health outcomes. In a similar way, clinical research has also been moving away from old models of research “about” patients as “subjects”toward creation of research “with” patients as “partners” in the grant writing, protocol development, implementation, and result interpretation process.  \nThat is why I am particularly pleased with this edition of Medical Care, because we (the editorial board and guest editors) have engaged in the practice of supporting and disseminating the patient voice in academic publication. In “Patient Voices Leading Change: A Call to Action for Careful, Kind, and Connected Patient-Partnered Research in PCORnet®”,1  \nFrom the Department of Population and Quantitative Health Sciences, UMass Chan Medical School, Worcester, MA  \nJ.T. serves as a consultant to CVS Health and CVS Omnicare for work unrelated to this manuscript.  \nCorrespondence to: Jennifer Tjia, MD, MSCE, Department of Population and Quantitative Health Sciences, UMass Chan Medical School, 55 N. Lake Avenue, AS6-2065, Worcester, MA 01605 . E-mail: [jennifer.tjia@umassmed.edu](jennifer.tjia@umassmed.edu).  \nCopyright © 2026 The Author(s) . Published by Wolters Kluwer Health, Inc. This is an open access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal.  \nDOI: 10.1097/MLR.0000000000002266  \n[S172](S172 | www.lww-medicalcare.com)[ |](S172 | www.lww-medicalcare.com)[ www.lww-medicalcare.com](S172 | www.lww-medicalcare.com)  \nGreg Merritt, Ava Zebrick, Bill Stephens, Crispin Goytia, Melissa Bronson, Nadine Zemon, Neely Williams, and Shirley Stowe provide their first person view on the role and experience of patients in the research enterprise, and in this way are “speaking directly” with you, researchers in the field. As in clinical medicine, it is important to practice “reflective listening” when reading their article, and I invite you to do so. In this way, we as editors and authors can invite you as research practitioners to consider reflecting on your own practice of research design and generation. We hope that this generates new ideas on how to be inclusive of patients in your research process.  \nAs with good population-based sampling in a well-designed research study, there is a systematic bias that gets introduced when we exclude certain populations, such as patients. In fact, I recently met a cultural anthropologist and a sociologist who together edited an important book about research and society. And in that book, one of the important questions that they pose is “whose voice gets to be heard”.2  \nTo minimize bias in the voices included in the a","cbCaivaTLBaaWdXG","https://ap.wps.com/l/cbCaivaTLBaaWdXG","pdf",118827,"English","# Patient inclusion in PCORnet®\n## From “about” patients to “with” patients\n# Disseminating patient voices in academic publication\n## Reflective listening for researchers\n# Barriers to publishing the patient voice\n## Journal availability, power dynamics, and methodological challenges\n## Authorship and submission process difficulties","[{\"question\":\"Why does the author emphasize patient inclusion in PCORnet®?\",\"answer\":\"Because patient-centeredness requires clinicians and research teams to listen and partner with patients in both creating and disseminating research, improving health success and outcomes.\"},{\"question\":\"How does the author describe the shift in research models?\",\"answer\":\"She contrasts older models that research “about” patients as subjects with newer approaches that create research “with” patients as partners across grant writing, protocol development, implementation, and interpretation.\"},{\"question\":\"What challenges does the author identify for publishing the patient voice?\",\"answer\":\"She notes limited venues for hosting patient and community voices, academic power dynamics and prestige tiering, and methodological gaps such as guidance on authorship and difficulties with submission requirements.\"}]","Nothing About Us Without Us - Publishing the Patient Voice | PDF"]