Review

. 2024 Feb 12;10(1):25.

doi: 10.1186/s40900-024-00545-7.

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

Manoj M Lalu^{1

2

3

4

5}, Dawn Richards^{6

7}, Madison Foster⁸, Brittany French⁸, Angela M Crawley^{9

10

11}, Kirsten M Fiest¹², Kathryn Hendrick⁷, Kimberly F Macala¹³, Asher A Mendelson¹⁴, Pat Messner¹⁵, Stuart G Nicholls¹⁶, Justin Presseau^{8

17}, Cheryle A Séguin¹⁸, Patrick Sullivan¹⁹, Bernard Thébaud^{20

21

22}, Dean A Fergusson^{8

17

23}

Affiliations

¹ Blueprint Translational Research Group, Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada. mlalu@toh.ca.
² Regenerative Medicine Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada. mlalu@toh.ca.
³ Department of Anesthesiology and Pain Medicine, The Ottawa Hospital, Ottawa, ON, Canada. mlalu@toh.ca.
⁴ Department of Cellular and Molecular Medicine, University of Ottawa, Ottawa, ON, Canada. mlalu@toh.ca.
⁵ Clinical Epidemiology and Regenerative Medicine Programs, BLUEPRINT Translational Research Group, The Ottawa Hospital Research Institute, Room B307, 1053 Carling Ave, Mail Stop 249, Ottawa, K1Y 4E9, Canada. mlalu@toh.ca.
⁶ Five 02 Labs Inc, Toronto, ON, Canada.
⁷ Patient Partner, Toronto, ON, Canada.
⁸ Blueprint Translational Research Group, Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁹ Chronic Disease Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
¹⁰ Department of Biochemistry, Microbiology and Immunology, University of Ottawa, Ottawa, ON, Canada.
¹¹ Centre for Infection, Immunity and Inflammation, University of Ottawa, Ottawa, ON, Canada.
¹² Department of Critical Care Medicine, University of Calgary, Calgary, AB, Canada.
¹³ Departments of Critical Care Medicine and Anesthesiology and Pain Medicine, Royal Alexandra Hospital, Edmonton, AB, Canada.
¹⁴ Section of Critical Care Medicine, Department of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
¹⁵ Patient Partner, Ottawa, ON, Canada.
¹⁶ Ottawa Methods Centre, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
¹⁷ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.
¹⁸ Department of Physiology and Pharmacology, Schulich School of Medicine and Dentistry, The University of Western, London, ON, Canada.
¹⁹ Patient Partner, Vancouver, BC, Canada.
²⁰ Regenerative Medicine Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
²¹ Department of Cellular and Molecular Medicine, University of Ottawa, Ottawa, ON, Canada.
²² Department of Pediatrics, Children's Hospital of Eastern Ontario (CHEO) and CHEO Research Institute, Ottawa, Canada.
²³ Department of Medicine, University of Ottawa, Ottawa, Canada.

PMID: 38347658
PMCID: PMC10863123
DOI: 10.1186/s40900-024-00545-7

Review

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

Manoj M Lalu et al. Res Involv Engagem. 2024.

. 2024 Feb 12;10(1):25.

doi: 10.1186/s40900-024-00545-7.

Authors

Affiliations

¹ Blueprint Translational Research Group, Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada. mlalu@toh.ca.
² Regenerative Medicine Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada. mlalu@toh.ca.
³ Department of Anesthesiology and Pain Medicine, The Ottawa Hospital, Ottawa, ON, Canada. mlalu@toh.ca.
⁴ Department of Cellular and Molecular Medicine, University of Ottawa, Ottawa, ON, Canada. mlalu@toh.ca.
⁵ Clinical Epidemiology and Regenerative Medicine Programs, BLUEPRINT Translational Research Group, The Ottawa Hospital Research Institute, Room B307, 1053 Carling Ave, Mail Stop 249, Ottawa, K1Y 4E9, Canada. mlalu@toh.ca.
⁶ Five 02 Labs Inc, Toronto, ON, Canada.
⁷ Patient Partner, Toronto, ON, Canada.
⁸ Blueprint Translational Research Group, Clinical Epidemiology Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
⁹ Chronic Disease Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
¹⁰ Department of Biochemistry, Microbiology and Immunology, University of Ottawa, Ottawa, ON, Canada.
¹¹ Centre for Infection, Immunity and Inflammation, University of Ottawa, Ottawa, ON, Canada.
¹² Department of Critical Care Medicine, University of Calgary, Calgary, AB, Canada.
¹³ Departments of Critical Care Medicine and Anesthesiology and Pain Medicine, Royal Alexandra Hospital, Edmonton, AB, Canada.
¹⁴ Section of Critical Care Medicine, Department of Medicine, Rady Faculty of Health Sciences, University of Manitoba, Winnipeg, MB, Canada.
¹⁵ Patient Partner, Ottawa, ON, Canada.
¹⁶ Ottawa Methods Centre, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
¹⁷ School of Epidemiology and Public Health, University of Ottawa, Ottawa, ON, Canada.
¹⁸ Department of Physiology and Pharmacology, Schulich School of Medicine and Dentistry, The University of Western, London, ON, Canada.
¹⁹ Patient Partner, Vancouver, BC, Canada.
²⁰ Regenerative Medicine Program, The Ottawa Hospital Research Institute, Ottawa, ON, Canada.
²¹ Department of Cellular and Molecular Medicine, University of Ottawa, Ottawa, ON, Canada.
²² Department of Pediatrics, Children's Hospital of Eastern Ontario (CHEO) and CHEO Research Institute, Ottawa, Canada.
²³ Department of Medicine, University of Ottawa, Ottawa, Canada.

PMID: 38347658
PMCID: PMC10863123
DOI: 10.1186/s40900-024-00545-7

Abstract

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.

Keywords: Basic science; Consumer involvement; Deliberative knowledge space; Delphi survey; Framework; Laboratory research; Patient and public involvement; Patient engagement; Patient oriented research; Pilot field test; Preclinical laboratory research; Preclinical research.

Plain language 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.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

**Fig. 1**
Proposed steps to create a process framework for patient engagement in laboratory-based preclinical research

See this image and copyright information in PMC

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References

1. Fox G, Fergusson DA, Daham Z, Youssef M, Foster M, Poole E, et al. Patient engagement in preclinical laboratory research: a scoping review. EBioMedicine. 2021;70:103484. doi: 10.1016/j.ebiom.2021.103484. - DOI - PMC - PubMed
1. Maccarthy J, Guerin S, Wilson AG, Dorris ER. Facilitating public and patient involvement in basic and preclinical health research. PLoS ONE. 2019;14(5):e0216600. doi: 10.1371/journal.pone.0216600. - DOI - PMC - PubMed
1. Government of Canada - Canadian Institutes of Health Research. Patient engagement—CIHR [Internet]. 2012 [cited 2022 Dec 23]. Available from: https://cihr-irsc.gc.ca/e/45851.html.
1. Foster M, Fergusson DA, Thompson E, Hunniford V, Richards DP, Messner P, et al. Engaging patients in preclinical laboratory research: an interview study. Prep. 2022.
1. Carroll P, Dervan A, Maher A, McCarthy C, Woods I, Kavanagh R, et al. Applying Patient and Public Involvement in preclinical research: a co-created scoping review. Health Expect Int J Public Particip Health Care Health Policy. 2022;25(6):2680–2699. - PMC - PubMed

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

Affiliations

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

Authors

Affiliations

Abstract

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Conflict of interest statement

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Abstract

Plain language summary

Conflict of interest statement

Figures

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