Browsing by Author "Richards, Dawn P"
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Item Open Access Guidance on authorship with and acknowledgement of patient partners in patient-oriented research(2020-07-02) Richards, Dawn P; Birnie, Kathryn A; Eubanks, Kathleen; Lane, Therese; Linkiewich, Delane; Singer, Lesley; Stinson, Jennifer N; Begley, Kimberly NAbstract 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.Item Open Access Patient preferences to value health outcomes in rheumatology clinical trials: Report from the OMERACT special interest group(Oxford University Press, British Society for Rheumatology, 2021-05-24) Thomas, Megan; Fraenkel, Liana; Boonen, Annelies; Bansback, Nick; Buchbinder, Rachelle; Marshall, Deborah; Proulx, Laurie; Voshaar, Marieke; Richards, Pamela; Richards, Dawn P; Hiligsmann, Mickael; Guillemin, Francis; Shea, Beverly; Tugwell, Peter; Hazlewood, GlenObjective. To inform a research plan for future studies by obtaining stakeholder input on the application of preference-based methods to clinical trial design. Methods. We conducted a virtual OMERACT session to encourage stakeholder engagement. We developed materials for the session to facilitate discussion based on identified case examples and feedback sessions. Results. Participants prioritized incorporating patient preferences in all aspects of trial design with an emphasis on outcome selection. Participants highlighted the need for careful consideration around preference heterogeneity and equity factors. Conclusion. Including patient preferences in trial design was considered a priority requiring further exploration to develop comprehensive guidance.