Protocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research

dc.contributor.authorLalu, Manoj M.
dc.contributor.authorRichards, Dawn
dc.contributor.authorFoster, Madison
dc.contributor.authorFrench, Brittany
dc.contributor.authorCrawley, Angela M.
dc.contributor.authorFiest, Kirsten M.
dc.contributor.authorHendrick, Kathryn
dc.contributor.authorMacala, Kimberly F.
dc.contributor.authorMendelson, Asher A.
dc.contributor.authorMessner, Pat
dc.contributor.authorNicholls, Stuart G.
dc.contributor.authorPresseau, Justin
dc.contributor.authorSéguin, Cheryle A.
dc.contributor.authorSullivan, Patrick
dc.contributor.authorThébaud, Bernard
dc.contributor.authorFergusson, Dean A.
dc.date.accessioned2024-03-06T15:48:15Z
dc.date.available2024-03-06T15:48:15Z
dc.date.issued2024-02-12
dc.date.updated2024-03-01T04:37:00Z
dc.description.abstractAbstract Background Patient engagement in research is the meaningful and collaborative interaction between patients and researchers throughout the research process. Patient engagement can help to ensure patient-oriented values and perspectives are incorporated into the development, conduct, and dissemination of research. While patient engagement is increasingly prevalent in clinical research, it remains relatively unrealized in preclinical laboratory research. This may reflect the nature of preclinical research, in which routine interactions or engagement with patients may be less common. Our team of patient partners and researchers has previously identified few published examples of patient engagement in preclinical laboratory research, as well as a paucity of guidance on this topic. Here we propose the development of a process framework to facilitate patient engagement in preclinical laboratory research. Methods Our team, inclusive of researchers and patient partners, will develop a comprehensive, empirically-derived, and stakeholder-informed process framework for ‘patient engagement in preclinical laboratory research.’ First, our team will create a ‘deliberative knowledge space’ to conduct semi-structured discussions that will inform a draft framework for preclinical patient engagement. Over the course of several sessions, we will identify actions, activities, barriers, and enablers (e.g. considerations and motivations for patient engagement in preclinical laboratory research, define roles of key players). The resulting draft process framework will be further populated with examples and refined through an international consensus-building Delphi survey with patients, researchers, and other collaborator organizations. We will then conduct pilot field tests to evaluate the framework with preclinical laboratory research groups paired with patient partners. These results will be used to create a refined framework enriched with real-world examples and considerations. All resources developed will be made available through an online repository. Discussion Our proposed process framework will provide guidance, best practices, and standardized procedures to promote patient engagement in preclinical laboratory research. Supporting and facilitating patient engagement in this setting presents an exciting new opportunity to help realize the important impact that patients can make.
dc.description.abstractPlain English Summary Engaging patients as partners or collaborators in clinical research is becoming more common, but it is still new in preclinical research. Preclinical researchers work in laboratories on cell and animal experiments. They traditionally don’t have frequent interactions with patients compared to their clinical research colleagues. Integrating patient engagement in preclinical laboratory research may help ensure that patient perspectives and values are considered. To help preclinical laboratory research align with patient-centred priorities we propose the development of a practical framework. This framework will facilitate patient engagement in preclinical laboratory research. To achieve this, we will first hold in-depth discussions with patient partners, researchers, and other collaborators to understand views on patient engagement in preclinical laboratory research. Together, we will identify key considerations to draft a framework, including motivations for patient engagement in preclinical laboratory research, and defining the roles of those who need to be involved. We will refine the framework through an international survey where we will collect feedback from researchers, patient partners, and other collaborators to make further improvements. The framework will then be tested and refined by preclinical laboratory teams inclusive of patient partners. The finalized framework and other resources to facilitate patient engagement in preclinical laboratory research will be hosted in a ‘one-stop-shop’ of online resources. Ultimately, this framework will enable partnerships between patients and researchers and provide a roadmap for patient engagement in preclinical laboratory research. This presents an exciting new opportunity for patients and researchers to collaborate and potentially improve translation of laboratory-based research.
dc.identifier.citationResearch Involvement and Engagement. 2024 Feb 12;10(1):25
dc.identifier.urihttps://doi.org/10.1186/s40900-024-00545-7
dc.identifier.urihttp://hdl.handle.net/1993/38040
dc.language.rfc3066en
dc.rights.holderThe Author(s)
dc.titleProtocol for co-producing a framework and integrated resource platform for engaging patients in laboratory-based research
dc.typeJournal Article
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