Abstract
The Strategy for Patient-Oriented Research Chronic Pain Network was founded in 2016 and is a patient-oriented research network funded by the Canadian Institutes of Health Research. The Network incorporates patient partners throughout its governance and operations meaning that patient partners may contribute to research projects in ways that warrant scientific authorship as defined by the International Committee of Medical Journal Editors. The Network did a brief informal review of guidance on patient authorship in 2019, but could not find any practical documentation to guide its members on this topic. Note the term patient partner here refers to a patient (or caregiver or other person with lived experience) who is a partner or collaborator on a research team. This guidance does not address patients as participants in a research study.This guidance has been co-written by a group of researchers and patient partners of the Chronic Pain Network in an effort to address this gap. It is intended for both researchers and patient partner audiences. This guidance is meant to facilitate conversations between researchers and patient partners about authorship and/or acknowledgement regarding research projects on which they collaborate. While the overall principles of academic authorship and acknowledgement remain unchanged, nuances for interpreting these principles through the lens of patient engagement or patient-oriented research is provided.Teams that carry out patient-oriented research projects will require different preparation to empower all team members (researchers and patient partners) to discuss authorship and acknowledgement. To facilitate these conversations, we have included an overview of the scientific publishing process, explanation of some common terms, and sets of considerations are provided for both patient partners and researchers in determining the range of team member contribution from acknowledgement to authorship. Conversations about authorship can be difficult, even for established research teams. This guidance, and the resources discussed within it, are provided with the intention of making these conversations easier and more thoughtful.
Highlights
Why this guidance was written Very limited guidance specific to patient-oriented research and authorship is currently available in the published scientific or grey literature
An informal survey of the literature identified three sources of potential guidance, including: standard publisher recommendations for determining academic authorship [6, 7], articles discussing concretely how to include patients as partners in medical publications [8, 9], and a systematic review examining whether certain journals, countries or fields are more likely to include patients and members of the public as authors [10]
The values of patient engagement and patient partnership on research teams imply that existing ICJME recommendations for determining authorship and acknowledgement will be used, we felt that the application of these recommendations was not clear in the context of patientoriented research and specific supplementary practical guidance was warranted
Summary
The Canadian Institutes of Health Research (CIHR), Canada’s federal health research funding agency, created the Strategy for Patient-Oriented Research program in 2010 with the aim to support patient-oriented research in Canada. CIHR stresses that patient engagement in patient-oriented research includes patients as partners via meaningful and active collaboration in governance, priority setting, and conduct of research and knowledge translation [1]. In 2016, CIHR funded a number of national chronic disease networks for a period of 5-years One of those Strategy for Patient-Oriented Research networks was the Chronic Pain Network ( referred to as ‘the Network’ [3]). Patients are actively involved and participating as partners throughout the Network’s governance, priority setting [4], research, and knowledge translation activities. Given this high level of patient engagement across the Network, there have been instances where patient partners have been recognized as authors on scientific publications from Networkfunded research projects [5] (personal communication with Dr Dave Walton, March 5, 2020). In carrying out this work, a gap was identified in supporting Network members to determine authorship and acknowledgement contributions of patient partners
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