Nothing About Us Without Us

It has been a pleasure and privilege to work with the PCORnet 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. I 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. That 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 Greg 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. As 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 To minimize bias in the voices included in the academic forum, I would ask us to consider that we need more patient voices to be included. But, in order for that to happen, we need to consider the many challenges. First, there are few journals to host the patient and community voice. One that comes to mind is “Progress in Community Health Partnerships: Research, Education and Action”, the first scholarly journal dedicated to community-based participatory research. Second, there needs to be a willingness for all stakeholders engaged in the process of knowledge generation to be willing to engage with the power dynamics of academia. Academic is historically hierarchical, and the publication process is no different. There is tiering of journals in terms of prestige, implicit bias between professions and fields of clinical practice and academic practice, and almost certainly an inherent bias against the publishing the unvarnished voice of patients. Third, there are methodological challenges.3 Currently, there is limited systematic guidance to support patient partners as they navigate the complexities of the publication process.4 One recent paper reports “... it can be difficult for patient partners to understand when and how they should be included as authors, how to collaborate in the writing process, and how to complete mandatory tasks during the submission process.” I would ask us not to underestimate the enormous barriers to publication that exist just in the submission process alone, let alone with the requirements for reference formatting, conventions in grammar, and other nuances that trained researchers learn almost as second nature. At a minimum, there could be greater clarity about how to include patient authors, and training and resources to support mandatory tasks in the manuscript submission process, such as how to navigate the web platform, how to upload required attachments, and how to complete copyright and licensing agreements. Further, there needs to be a dialogue among academics, publishers and alike to other review barriers and facilitators within existing publication practices that can shed light on how to ensure that the scientific publication process is accessible for patient partners. I invite you and others in the profession of “knowledge generation” to consider the challenges of including the patient voice in the dissemination and publication process. Let’s engage in the conversation. Let’s establish recommendations and standards for practice. It is important. It can be done. And we will all be better for it

Action (physics) · General partnership · Gratitude · Health care · Interpretation (philosophy) · Nothing · Pleasure · Privilege (computing) · Publishing · Work (physics) · Health Policy Implementation Science · Mental Health and Patient Involvement · Patient-Provider Communication in Healthcare