Giving credit where credit’s due - recognition of patient partners in health research

Patient partnership in health research has gained prominence over the last decade. Patient partners and the impact of their perspectives on research activities and outcomes are increasingly valued. However, despite the recognized importance of patient contributions, issues persist regarding their visibility in research outputs. While guidelines for authorship and acknowledgment of patient partners exist, inconsistencies in their application remain prevalent. This commentary surveys the current landscape of authorship, acknowledgement, and indexing practices for patient involvement in health research. We highlight three persistent challenges: (1) insufficient recognition of patient partners who meet the criteria for co-authorship or formal acknowledgment; (2) vague reporting of patient partner contributions within manuscripts; and (3) widely varying terminology and indexing terms that hinder discoverability in academic databases. To address these challenges, we propose actionable recommendations: Following existing reporting guidelines or instituting new guidelines for patient engagement within academic journals; documenting patient partner contributions in searchable fields of publications; and adopting consistent and standardized terminology for patient engagement. By implementing these changes, the health research community can better capture and recognize the valuable contributions of patient partners, thereby advancing Patient-Oriented Research practices and ultimately improving health outcomes for patients and families. Patient-Oriented Research involves patients and their families as partners (active team members) throughout the research process. Patient-partners help improve the design of research studies, to ensure they truly benefit children and their families. However, despite their essential contributions, patient-partners are often not credited adequately in published research articles. Many research papers do not recognize patient partners at all, and/or do not clearly describe patient-partners’ involvement. Even when patient partners are credited, their contributions are often hard to find due to inconsistent terminology and difficulties searching for papers with patient-partners in research databases. To help address these issues, we recommend that researchers (1) follow existing guidelines to make sure patient partners receive proper credit, (2) clearly describe the role and contributions of patient partners in research articles, and (3) use consistent and searchable terms to improve the visibility of patient involvement in research databases. We can strengthen Patient-Oriented Research by making sure patient partners and their contributions are appropriately recognized.