Giving credit where credit's due - recognition of patient partners in health research
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Published on: January 12, 2018
Danielle Pietramala1, Gabriel Zamma1,2, Candice Barrans1,2
1BC Children's Hospital Research Institute, 938 W 28th Ave, Vancouver, BC, V5Z 4H4, Canada.
Abstract:
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.
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