This page contains a poster presented at the 21st Annual Meeting of ISMPP (International Society for Medical Publication Professionals), which took place from May 11 to 14, 2025.
Authors and affiliations
Authors: Swapna Ganduri, Jeenu Jacob, Ruchika Agrawal, Nilima Vyas, Charvin D’souza, and Namita Bose
Affiliation: Cactus Life Sciences, Mumbai, India
Abstract
Objective: Power of the patient voice [1] can significantly improve patients’ overall experience and quality of healthcare as it offers a unique perspective for personalized care and informed decision-making. We aimed to evaluate trends and awareness/perspectives related to patient-authored publications.
Research design and methods: We identified publications and analyzed the representation of patient voice using the following search terms under affiliations on PubMed: patient author, patient advocate, patient partner, patient representative, patient group, patient panel, patient advocacy group, caregiver, carer, and patient relative. We also conducted a 14-question survey among medical communications professionals.
Results: Of the 2456 articles retrieved, 2004 (81.6%) included patient voice as authors. Terms used for authorship affiliation varied: “patient representative” (33.6%) was the most common, followed by “patient advocate” (21.1%) and “patient partner” (20.3%). Most publications (93.9%) did not have pharma affiliations; 89.4% had 1-2 authors representing patient voice. Most of these authors were either from the UK or US (~30% each), followed by Canada (~22%). In terms of content, oncology was the most common therapeutic area (~23%).
Of the survey respondents, 77.5% (31/40) were aware of patient/caregiver involvement and 37.5% (15/40) were involved in patient-authored publications. Approximately 50% (7/15) were aware of GPP2022 and/or ICMJE guidelines for patient authorship; 80% (12/15) did not use the GRIPP2 checklist [2]. Although 33.3% (5/15) respondents faced challenges working with patient authors, 80% (12/15) acknowledged advantages of involving them in the publication process.
Conclusions: Patient voice in published literature has steadily increased over the past 5 years; however, awareness regarding specific guidelines for patient authorship is lacking. Efforts are needed to better incorporate patient perspectives in publications as standard practice across therapy areas.
Keywords: advocacy, authorship, patients
CactusLifeSciences_Poster-44_VoP_ISMPP-2025_
Cactus Life Sciences
Cactus Life Sciences is a medical communication company that provides scientific strategy and content across the healthcare continuum, anywhere in the world ─ with a focus on science, innovation, and efficiency. We work alongside leading healthcare companies to establish the optimal role of medicines and encourage positive behaviors (physician and patient) that improve patient outcomes.