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Femke Hoekstra, Francisca Trigo, Kathryn M. Sibley, Ian D. Graham, Michael Kennefick, Kelly J. Mrklas, Tram Nguyen, Mathew Vis-Dunbar, SC. I. Guiding Principles Consensus Panel & Heather L. Gainforth (2023) Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions: A scoping review, The Journal of Spinal Cord Medicine, 46:4, 614-631
International Collaboration on Repair Discoveries
Hoekstra, Femke
Trigo, Francisca
Sibley, Kathryn M.
Graham, Ian D.
Kennefick, Michael
Mrklas, Kelly J.
Nguyen, Tram
Vis-Dunbar, Mathew
Gainforth, Heather
Study design: Scoping review. Objective: To identify and provide systematic overviews of partnership principles and strategies identified from health research about spinal cord injury (SCI) and related health conditions. Methods: Four health electronic databases (Medline, Embase, CINAHL, PsycINFO) were searched from inception to March 2019. We included articles that described, reflected, and/or evaluated one or more collaborative research activities in health research about SCI, stroke, multiple sclerosis, Parkinson’s disease, amputation, cerebral palsy, spina bifida, amyotrophic lateral sclerosis, acquired brain injury, or wheelchair-users. Partnership principles (i.e. norms or values) and strategies (i.e. observable actions) were extracted and analyzed using directed qualitative content analysis. Results: We included 39 articles about SCI (n = 13), stroke (n = 15), multiple sclerosis (n = 5), amputation (n = 2), cerebral palsy (n = 2), Parkinson’s disease (n = 1), and wheelchair users (n = 1). We extracted 110 principles and synthesized them into 13 overarching principles. Principles related to building and maintaining relationships between researchers and research users were most frequently reported. We identified 32 strategies that could be applied at various phases of the research process and 26 strategies that were specific to a research phase (planning, conduct, or dissemination).
The Journal of Spinal Cord MedicineISSN: 1079-0268 (Print) 2045-7723 (Online) Journal homepage: www.tandfonline.com/journals/yscm20Systematic overviews of partnership principlesand strategies identified from health researchabout spinal cord injury and related healthconditions: A scoping reviewFemke Hoekstra, Francisca Trigo, Kathryn M. Sibley, Ian D. Graham, MichaelKennefick, Kelly J. Mrklas, Tram Nguyen, Mathew Vis-Dunbar, SC. I. GuidingPrinciples Consensus Panel & Heather L. GainforthTo cite this article: Femke Hoekstra, Francisca Trigo, Kathryn M. Sibley, Ian D. Graham,Michael Kennefick, Kelly J. Mrklas, Tram Nguyen, Mathew Vis-Dunbar, SC. I. Guiding PrinciplesConsensus Panel & Heather L. Gainforth (2023) Systematic overviews of partnership principlesand strategies identified from health research about spinal cord injury and related healthconditions: A scoping review, The Journal of Spinal Cord Medicine, 46:4, 614-631, DOI:10.1080/10790268.2022.2033578To link to this article: https://doi.org/10.1080/10790268.2022.2033578© 2022 The Author(s). Published withlicense by Taylor & Francis Group, LLCView supplementary material Published online: 09 Mar 2022. Submit your article to this journal Article views: 2990 View related articles View Crossmark data Citing articles: 14 View citing articles Full Terms & Conditions of access and use can be found athttps://www.tandfonline.com/action/journalInformation?journalCode=yscm20ReviewSystematic overviews of partnership principlesand strategies identified from health researchabout spinal cord injury and related healthconditions: A scoping reviewFemke Hoekstra 1,2,3, Francisca Trigo3, Kathryn M. Sibley4,5,Ian D. Graham 6,7, Michael Kennefick1, Kelly J. Mrklas8,9, Tram Nguyen10,11,12,Mathew Vis-Dunbar 13, SC. I. Guiding Principles Consensus Panel,Heather L. Gainforth 1,21School of Health and Exercise Sciences, University of British Columbia, Kelowna, BC, Canada, 2InternationalCollaboration on Repair Discoveries (ICORD), University of British Columbia, Vancouver, BC, Canada, 3Centre forHuman Movement Sciences, University of Groningen, University Medical Centre Groningen, Groningen, theNetherlands, 4Department of Community Health Sciences, Max Rady College of Medicine, University ofManitoba, Winnipeg, MB, Canada, 5George and Fay Yee Centre for Healthcare Innovation, University ofManitoba, Winnipeg, MB, Canada, 6School of Epidemiology and Public Health, Faculty of Medicine, University ofOttawa, Ottawa, ON, Canada, 7Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, ON,Canada, 8Department of Community Health Sciences, Cumming School of Medicine, University of Calgary,Calgary, AB, Canada, 9Strategic Clinical Networks™, Provincial Clinical Excellence, Alberta Health Services,Calgary, AB, Canada, 10School of Epidemiology and Public Health, Faculty of Medicine, University ofOttawa, Ottawa, ON, Canada, 11Clinical Epidemiology Program, Ottawa Hospital Research Institute,Ottawa, ON, Canada, 12CanChild Centre for Childhood Disability Research, Faculty of Health Sciences,McMaster University, Hamilton, ON, Canada, 13UBC Okanagan Library, University of British Columbia,Kelowna, BC, CanadaStudy design: Scoping review.Objective: To identify and provide systematic overviews of partnership principles and strategies identified fromhealth research about spinal cord injury (SCI) and related health conditions.Methods: Four health electronic databases (Medline, Embase, CINAHL, PsycINFO) were searched frominception to March 2019. We included articles that described, reflected, and/or evaluated one or morecollaborative research activities in health research about SCI, stroke, multiple sclerosis, Parkinson’s disease,amputation, cerebral palsy, spina bifida, amyotrophic lateral sclerosis, acquired brain injury, or wheelchair-users. Partnership principles (i.e. norms or values) and strategies (i.e. observable actions) were extractedand analyzed using directed qualitative content analysis.Results:We included 39 articles about SCI (n = 13), stroke (n = 15), multiple sclerosis (n = 5), amputation (n =2), cerebral palsy (n = 2), Parkinson’s disease (n = 1), and wheelchair users (n = 1). We extracted 110principles and synthesized them into 13 overarching principles. Principles related to building andmaintaining relationships between researchers and research users were most frequently reported. Weidentified 32 strategies that could be applied at various phases of the research process and 26 strategiesthat were specific to a research phase (planning, conduct, or dissemination).Correspondence to: Femke Hoekstra, School of Health and Exercise Sciences, University of British Columbia, Kelowna, BC, Canada; Email: femke.hoekstra@ubc.caSupplemental data for this article can be accessed at https://doi.org/10.1080/10790268.2022.2033578.Color versions of one or more of the figures in the article can be found online at www.tandfonline.com/yscm.© 2022 The Author(s). Published with license by Taylor & Francis Group, LLCThis is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited, and is notaltered, transformed, or built upon in any way.DOI 10.1080/10790268.2022.2033578 The Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4614Conclusion: We provided systematic overviews of principles and strategies for research partnerships. Thesecould be used by researchers and research users who want to work in partnership to plan, conduct and/ordisseminate their SCI research. The findings informed the development of the new SCI IntegratedKnowledge Translation Guiding Principles (www.iktprinciples.com) and will support the implementation ofthese Principles within the SCI research system.Keywords: Integrated knowledge translation, Spinal cord injury, Research partnership, Collaborative research, Stakeholder engagement, Principles andstrategies, Knowledge synthesesIntroductionWhile health research has the potential to improve thelives of many people with spinal cord injury (SCI),research findings are not always used or translated toclinical, community, and/or policy settings.1–6Engaging research users (e.g. people with SCI, clini-cians, representatives of community organizations) aspartners (i.e. co-researchers or collaborators) in theresearch process has been identified as a promisingapproach to enhance the translation of research find-ings to clinical, community and/or policy settings.7–10Such research partnership approaches also support pre-vious calls from people with disabilities indicating thatthere should be “nothing about us, without us”11.Research partnerships have been defined as “individ-uals, groups, or organizations that are engaged in colla-borative research activities involving at least oneresearcher and any stakeholder”12 and have been increas-ingly promoted, requested,13,14 and applied in variousresearch areas,15–20 including SCI research.21–23.Despite the growing popularity of research partner-ships and the potential positive outcomes and impactson the research process, partnership and community/society,16,17,24 SCI research partnership approachesare still a relatively understudied topic.25,26 This discon-nect is concerning, as SCI researchers have beenaccused of taking a tokenistic approach in their partner-ships (i.e. research users are asked to endorse a researchproject over which they have little control).11,21,23,27,28Furthermore, researchers and research users havereported many challenges or concerns when workingin partnership (e.g. additional time/resources, lack ofpartnership skills, unclear roles and responsibil-ities).15,29–32 Together, this illustrates the potentialneed and value in developing guidance on how to mean-ingfully work together in research partnerships.25,26,33.While some partnership guidance exists in terms offacilitating factors,15,20,25,34 mechanisms,35 and prin-ciples or guidelines,17,36–39 limited evidence-basedtools and resources exist that are tailored to SCIresearch partnerships. This need for tailored partner-ship guidance has been expressed by SCI researchersand research users. More specifically, there have beencalls to develop guidance on SCI research partnershipprocesses, in terms of partnership principles and strat-egies, to help SCI researchers and research users toovercome partnership challenges and improve meaning-ful research partnerships.22.A first step to creating guidance for SCI researchpartnerships is understanding what principles and strat-egies could be used to guide these partnerships byreviewing the relevant literature. Partnership principlesare defined here as “fundamental norms, rules, orvalues that represent what is desirable and positive for aperson, group, organization, or community, and help itin determining the rightfulness or wrongfulness of itsactions40”, and strategies are defined as “observableactions designed to achieve an outcome41”. Acquiringsystematic overviews of partnership principles and strat-egies identified from the literature could inform thedevelopment of evidence-based resources and tools toguide SCI research partnerships. Furthermore, an over-view of principles and strategies as potential underlyingand explanatory partnership processes,25 may alsoprovide reporting and evaluation guidance, and sub-sequently may contribute to enhancing our inquiryand understanding of partnership outcomes andimpacts.17,18,42.While a previous review of reviews provided an exten-sive list of potential principles and strategies based ongeneral partnership literature,17 further research isneeded to identify partnership principles and strategiesthat are specific to and/or relevant for the SCI researchcontext. To date, various reviews have been conductedon research partnerships and/or research user engage-ment in the rehabilitation and disability researcharea.9,10,43–46 However, these reviews did not providesystematic overviews of partnership principles and strat-egies relevant for SCI research partnerships with abroad group of potential research users (e.g. peoplewith lived experiences of a disability or health con-dition, clinicians, representatives of community organ-izations, policy- and decision-makers). We conducteda scoping review to understand what partnership prin-ciples and strategies could be used to guide SCI researchpartnerships. More specifically, we identified and pro-vided systematic overviews of partnership principlesand strategies identified from health research aboutHoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4 615SCI and other related health conditions (e.g. multiplesclerosis (MS), stroke). Pragmatically, this broaderscope allowed us to identify a variety of principles andstrategies that could be used to inform the developmentof partnership resources relevant to SCI research part-nerships with a diverse group of research users. Theresearch questions were:• What partnership principles are reported in the litera-ture that could be used to guide SCI research partner-ships? (RQ1).• What partnership strategies are reported in the litera-ture that could be used to plan, conduct and/or disse-minate SCI research in partnership with research users?(RQ2).MethodsProject overview and perspectiveThis scoping review is part of two larger projects. Thefirst project relates to a pan-Canadian collaborativereview project12 aimed to synthesize the research part-nership literature by conducting a review of reviews,17scoping reviews, and an umbrella review. Thesereviews are guided by a consensus-based frameworkincluding the following four research partnershipdomains: principles, strategies, outcomes andimpacts.12 The current scoping review focuses on twoof these key research partnerships domains, namelyprinciples and strategies specifically related SCIresearch.The second project relates to the development of theIntegrated Knowledge Translation (IKT) guiding prin-ciples for SCI research partnerships.22 In the context ofthis project, a multidisciplinary team of SCI research-ers, research users, and funders has been workingtogether to co-develop guiding principles and relatedresources to support meaningful SCI research partner-ships. This North American initiative was a responseto the need to offer and improve research partnershipguidance. The findings from this scoping review wereused to inform the development of the guiding prin-ciples and will be used to inform the development ofresources and tools to guide SCI research partnerships(www.iktprinciples.com).The study protocol is published in SystematicReviews and registered on Open Science Framework(OSF).12,47 The planning, conduct and reporting ofthe findings of this scoping review was guided bysteps described by Arksey, O’Malley et al.48 andLevac et al.49 as well as the Preferred Reporting Itemsfor Scoping reviews PRISMA-ScR for ScopingReviews.50 Appendix 1 includes the PRISMA-ScRreporting guidelines. Appendix 2 outlines the primaryresearch questions and the PICOS elements for thisscoping review. Appendix 3 describes deviations fromthe protocol.We approached this review from a pragmatic perspec-tive, which means that the primary objective of theresearch is to apply research to find solutions for prac-tical problems in “real-world” settings.51 Pragmatismfocuses on the practical outcomes of the knowledgewithin a particular context instead of focusing onseeking a single truth.Research user engagement in the scoping reviewAligning with our pragmatic approach,52 a multidisci-plinary panel (i.e. “SCI Guiding Principles ConsensusPanel”) consisting of SCI researchers, research usersand funders meaningfully engaged at various pointsin the review process. This panel was established todevelop IKT Guiding Principles for conducting anddisseminating SCI research in partnership withresearch users.22 At the start of the project, the panelheld a one-day meeting to establish consensus aboutthe vision of the project, key terms and definitions,research design, and panel members’ roles and respon-sibilities. They established their own definition of IKT:“meaningful engagement of the right research user at theright time throughout the research process”.22 Becauseno guiding principles for SCI research partnershipswere available at the start of this project, the paneldid not discuss or operationalize specific principlesused to guide their partnership. Instead, the panelagreed that they would adopt the IKT GuidingPrinciples for SCI research partnerships as soon asthey are available. In the context of this scopingreview, panel members were engaged in the decisionto conduct a review, the formulation of the researchquestion (i.e. decision to focus the findings on specificpopulation groups), the preparation of the data extrac-tion forms, and the data interpretation. Appendix 4outlines panel members’ names, organizations androles. Appendix 5 outlines key partnership strategiesused to engage panel members in the design andconduct of this scoping review. Further detailsabout the SCI Guiding Principles Consensus Paneland the IKT Guiding Principles project is describedelsewhere.22Search strategyFour health databases (Medline, Embase, CINAHL,PsycINFO) were searched by the academic librarian(MVD) from inception to March 2019. The searchstrategy included two parts: (1) search terms focusingon capturing the research partnership approach (e.g.Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4616participatory research, community-engaged research,patient and public involvement, knowledge translation,engaged scholarship); (2) search terms focusing on cap-turing research about people with SCI and related dis-abilities or health conditions (e.g. rehabilitation, SCI,stroke, MS). The first part of the search strategy wasdeveloped using the findings from our previous reviewof reviews on research partnership approaches andaimed to capture the variety of terms used to describeresearch partnership approaches (see OSF). Bothparts of the search strategy were independentlyreviewed and assessed by another academic librarian(CN) using the Peer Review of Electronic SearchStrategies (PRESS) checklist.53 The search strategywas finalized using the results from the PRESS check-list. The final search strategies of all databases and thePRESS checklist are available on OSF (https://osf.io/mzuwp/).Eligibility criteriaWe included articles that described, reflected, and/orevaluated a type of research partnership approach inhealth research about SCI and other related disabilitiesand/or health conditions. To be included the articleneeded to provide at least one example of a researchpartnership principle or strategy. In consultation withthe SCI Guiding Principles Consensus Panel, wedecided to include articles about SCI and related dis-abilities or health conditions, including: stroke, MS,cerebral palsy (CP), Parkinson’s disease, amputation,Amyotrophic Lateral Sclerosis (ALS), acquired braininjuries, and wheelchair users. Broadening our scopefrom SCI to related disabilities and health conditionsallowed us to identify more extensive overviews of prin-ciples and strategies that may be relevant for SCIresearch partnerships. We excluded articles thatfocused on general groups of people with physical dis-abilities for feasibility reasons (i.e. screening a largenumber of full text articles was considered as notbeing feasible and relevant in the context of thisproject due to the significant amount of time it wouldtake to screen these articles). Table 1 outlines theinclusion and exclusion criteria. The criteria used toscreen titles and abstracts are available on OSF(https://osf.io/mzuwp/).Screening processResults from the search strategies were exported to andmanaged using Endnote X.7.5.3 and Microsoft Excel.The de-duplication process was completed using thesteps outlined by Bramer et al.54 Two team members[FH and FT, FH and HG] independently used anExcel screening tool and the abstract-level eligibility cri-teria to screen titles and abstracts. Cohen’s kappa stat-istics were used to calculate reliability between eachscreening pair during title/abstract screening as wellas full text screening. Screening processes were startedonce a kappa ≥ 0.6 was reached. Cohen’s kappa wascalculated after each screening block. The meankappa scores were reported for each screening pairand screening phase (title/abstract and full-text).Consensus discussions were held to resolve any dis-agreements between screeners. The full text screeningprocess was conducted independently by same screen-ing pairs. Disagreements between screeners wereresolved through discussion. If disagreements couldnot be resolved throughout discussion, a third teammember (HLG, MK, or HG) was consulted to resolvethe disagreement.Data extraction and analysesData extraction of study and partnership characteristicswas done by one team member (FH, FT, MK) using anonline data extraction form (Qualtrics) and Excel. Thefollowing study characteristics were extracted andexported to Excel: first author, year of publication,country of first author, title, disability/health con-dition, study design, study aims, and general con-clusion. The following partnership characteristics wereextracted: partnership terms, partnership members,definition or description of the partnership, and levelof engagement. Afterwards, the first author (FH)reviewed the extracted information and discussed anyuncertainties in extracted information (e.g. partnershipdefinitions or description, study design) with one of thestudy members (HG, FT, MK). Data extraction andanalysis of the principles and strategies were guidedby directed qualitative content analysis 55 includingthe following key steps:• Development of the coding manual. Using the previousestablished definition of research partnership principles12 and a list of extraction rules, two coders (FH, HG)independently extracted principles from a selection ofincluded studies (n = 6; 15%). The coders reviewedand discussed the extracted information, resolved dis-agreements and developed the coding manual forresearch partnership principles iteratively. Similarly,two coders (FH and FT, FH and MK) independentlyextracted strategies from a selection of includedstudies (n = 6, 15%) using the previous establisheddefinition of strategy, a list of extraction rules, andthe coding manual developed during the previousreview of reviews (see OSF). This version of thecoding manual was then adapted and refined basedon the extracted information on research partnershipHoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4 617strategies. The reason why we used the existing codingmanual for strategies but not for the principles is thatwe experienced that the extraction process of strategies(i.e. observable actions) was more straightforward thanthe extraction process of principles (i.e. norms orvalues). After establishing or adapting the codingTable 1 Inclusion and exclusion criteria.Inclusion criteria Exclusion criteriaGeneral − The article describes, reflects and/or evaluates a typeof research partnership approach in the area of healthresearch about SCI or other related physical disabilitiesor health conditions, in which research users wereengaged in the research process.Population − The article relates to one of the following disabilities orpopulations: Spinal Cord Injury, Stroke, Multiple Sclerosis,Parkinson disease, Amputation, Cerebral Palsy, SpinaBifida, Amyotrophic Lateral Sclerosis, Acquired BrainInjury, wheelchair-users. This includes articles that focuson occupational therapists, nurses, physiotherapists orother healthcare providers working with one (or more) ofthe abovementioned groups.− The article focuses on general group of people witha (physical) disability or health condition.− The article focuses on any of the excludedpopulations combined with one of the includedpopulation (e.g. wheelchair users with chronic pain).Partnership − The article meets our definition of health researchpartnership:• Research partnership is defined as “individuals,groups or organizations engaged in collaborativeresearch activity involving at least one healthresearcher (e.g. individual affiliated with an academicinstitution), and any stakeholder (e.g. decision orpolicy maker, health care administrator or leader,community agency, charities, network, patientsetc.).”17• Collaborative research activity refers to an activity ormoment in the process of planning, conducting ordisseminating research in which there is an indicationof shared decision making between at least oneresearcher and at least one stakeholder.− The research relates to one of the four pillars of healthresearch as defined by CIHR: biomedical, clinicalresearch, health services research or population healthresearch.− The article describes, reflects and/or evaluates aresearch partnership OR describes, reflects and/orevaluates at least one collaborative research activity.− The article does not meet our definition of healthresearch partnership (e.g. physician – patientpartnership; student-teacher partnership) or does notprovide enough information about the collaborativeresearch activity to determine eligibility.− The article relates to patient engagement in healthcare decisions instead of research.− Research users are only included as participantsand not as research partners (e.g. Delphi studies).− If the article describes a research partnershipapproach or collaborative research activity withoutreflecting or evaluating it, the article is excluded if:• all research users are also all participants in theresearch (100% overlap between participants andresearch users) OR• the research users are only engaged in the designof the study and not in the conduct ordisseminating phase.− The article describes a public-private partnership(PPP) or university-industry partnership.− The article does not relate to one of the CIHR’shealth domains.Outcomes − The article describes at least one clear example of aprinciple that was used or could be used to guide aresearch partnership team OR at least one clear exampleof a strategy used to engage research users in thecollaborative research activity.− Principles are defined as “fundamental norms, rules, orvalues that represent what is desirable and positive for aperson, group, organization, or community, and help it indetermining the rightfulness or wrongfulness of itsactions. Principles are more basic than policy andobjectives, and are meant to govern both”.12− Strategies are defined as “observable actionsdesigned to achieve an outcome”.12− The article does not describe a clear example of apartnership principle or strategy.Other − The article uses quantitative, qualitative, or mixed-method research methods.− The article is published in English language.− The article is published in a peer-reviewed journal.− The article describes a literature review or describesa study protocol.− The article is not published in English language.− Books, theses, editorials, and conference abstractsare excluded.Note: A detailed description of the eligibility criteria including additional definitions and illustrating examples is published on OpenScience Framework. CIHR = Canadian Institutes of Health Research.Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4618manuals, data extraction of the remaining studies wasconducted by one team member (FH, FT, MK).• First round of analysis. After data extraction of prin-ciples and strategies was completed, the first author(FH) grouped together the codes that had similarmeaning and removed codes that did not meet our defi-nitions. The first and last author (FH and HLG) dis-cussed content of the coding manuals, re-organizedthe codes, and removed codes that did not meet ourpre-established definitions. This step resulted in twoorganized Excel sheets listing the principles and strat-egies extracted from the included studies.• Final round of analysis – principles (RQ1). The projectleads (FH, HLG) synthesized the principles into over-arching principles and grouped them into related pro-cesses. Other team members (KMS, IG, KM, TN,MVD) and panel members reviewed these overarchingprinciples and provided feedback. Based on the feed-back, the first and last author (FH, HLG) refinedand finalized the overarching principles. To enhancetransparency in our decision processes, different ver-sions are available on OSF.• Final round of analysis – strategies (RQ2). The firstauthor (FH) removed and re-organized the findingsof the strategies and discussed and refined the findingsafter a meeting with the last author (HLG).Afterwards, two team members (TF, MK) who wereinvolved in the data extraction, reviewed the findingsand provided feedback. The results were then finalizedby the first author (FH) based on the feedback fromother team members and panel members.ResultsLiterature searchThe search strategy resulted in a total of 8339 uniquecitations (Figure 1), of which 8078 were excludedafter title and abstract screening. Full texts of 262articles were reviewed, of which 39 were included inthis scoping review. The mean Cohen’s Kappa foreach of the screening pairs was considered as “sub-stantial” for title/abstract level (mean Kappa: 0.63and 0.61) and full-text screening level (meanKappa: 0.64 and 0.65).56 A list of included articlesis presented in Appendix 6, a list of excluded articlesis available via OSF.Study and partnerships characteristicsAn overview of study characteristics of the includedstudies is presented in Table 2. The majority of thearticles were published between the years 2015–2019(n = 22, 56%). The remaining articles were publishedbetween the years 2011–2014 (n = 13, 33%) or 2004–2010 (n = 4, 10%). Articles were published by firstauthors from Canada (n = 11), UK (n = 10), USA(n = 9), The Netherlands (n = 4), Australia (n = 3),New Zealand (n = 1), and Switzerland (n = 1).Figure 1 The PRISMA flowchart.Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4 619Table 2 Study and partnership characteristics.First author Year Country TitlePartnershipinformation type* Partnership terms Co-authorship**Descr Refl Eval Key term Other termsSCI (n = 13)Abma57 2005 TheNetherlandsPatient Participation in Health Research: ResearchWith and for People With Spinal Cord Injuries✓ ✓ Patient participation inhealth researchNoAllin75 2018 Canada Participatory Design of an Online Self-ManagementTool for Users With Spinal Cord Injury: QualitativeStudy✓ Participatory designProcessYesDuda76 2014 USA From theory to practice: an illustrative case forselecting evidence-based practices and buildingimplementation capacity in three Canadian healthjurisdictions✓ PAR Participatory Actionframework ofengaged scholarshipYesGainforth77 2015 Canada Using Network Analysis to Understand KnowledgeMobilization in a Community-based Organization✓ Partnership team Knowledgemobilization initiativeYesGainforth78 2015 Canada Examining the feasibility and effectiveness of acommunity-based organization implementing anevent-based knowledge mobilization initiative topromote physical activity guidelines for people withspinal cord injury among support personnel✓ Partnership approach Knowledgemobilization initiativeYesMartin Ginis79 2012 Canada A case study of a community-universitymultidisciplinary partnership approach to increasingphysical activity participation among people withspinal cord injury✓ ✓ Community-universitymultidisciplinarypartnershipCBPR; IKT YesMartin Ginis80 2012 Canada Takin’ it to the Streets: A Community-UniversityPartnership Approach to Physical Activity Researchand Knowledge Translation✓ ✓ Community-universitypartnershipNoLala81 2016 Canada Developing a Model of Care for Healing PressureUlcers With Electrical Stimulation Therapy forPersons With Spinal Cord Injury✓ CBPR PAR YesNewman82 2010 USA Evidence-based advocacy: Using Photovoice toidentify barriers and facilitators to communityparticipation after spinal cord injury✓ CBPR Research partnership YesNewman61 2015 USA A community-based participatory research approachto the development of a Peer Navigator healthpromotion intervention for people with spinal cordinjury✓ CBPR Community-engagedresearchYesNewman83 2018 USA Translating a spinal cord injury self-managementintervention for online and telehealth delivery: Acommunity-engaged research approach✓ Community-engagedresearchCBPR YesSweet84 2014 Canada Operationalizing the RE-AIM framework to evaluatethe impact of multi-sector partnerships✓ Community-universitypartnershipNot clearContinuedHoekstraetal.SystematicoverviewsofpartnershipprinciplesandstrategiesidentifiedfromhealthresearchTheJournalofSpinalCordMedicine2023VOL.46NO.4620Table 2 ContinuedFirst author Year Country TitlePartnershipinformation type* Partnership terms Co-authorship**Descr Refl Eval Key term Other termsWolfe85 2018 Canada An inclusive, online Delphi process for settingtargets for best practice implementation for spinalcord injury✓ StakeholderengagementParticipatory research YesStroke (n = 15)Bird86 2019 Canada Building a Bridge to the Community: An IntegratedKnowledge Translation Approach to ImprovingParticipation in Community-Based Exercise forPeople After Stroke✓ IKT YesBoote87 2014 UK "But is it a question worth asking? A reflective casestudy describing how public involvement can lead toresearchers ideas being abandoned✓ ✓ Public involvement YesFairborther59 2013 UK Involving patients in clinical research: the TelescotPatient Panel✓ ✓ PPI Joint collaborativeapproachYesGesell60 2017 USA Methods guiding stakeholder engagement inplanning a pragmatic study on changing strokesystems of care✓ ✓ StakeholderengagementCBPR YesGoldfinger88 2012 USA Peer education for secondary stroke prevention ininner-city minorities: Design and methods of theprevent recurrence of all inner-city strokes througheducation randomized controlled trial✓ ✓ CBPR YesHarrison89 2015 UK Exploring patient and public involvement in strokeresearch: a qualitative study✓ ✓ PPI YesHeaton35 2016 UK Collaborative research and the co-production ofknowledge for practice: an illustrative case study✓ ✓ Co-production ofknowledgeNot clearHebblethwaite90 2015 UK Exploring the Role of Community Recreation inStroke Recovery Using Participatory Action Researchand Photovoice✓ PAR YesHubbard91 2009 Australia Interprofessional, practice-driven research:reflections of one ‘community of inquiry’ based inacute stroke✓ Practice-drivenResearch (collaborative)YesMorgan92 2005 UK Consumers leading public consultation: The generalpublic’s knowledge of stroke✓ User involvement ConsumerinvolvementYesNanninga93 2014 TheNetherlandsKnowledge Translation and Implementation SpecialSeries. Combined Clinical and Home Rehabilitation:Case Report of an Integrated Knowledge-to-ActionStudy in a Dutch Rehabilitation Stroke Unit✓ PAR IntegratedKnowledge-to-ActionprocessNot clearSadler94 2017 UK Shaping innovations in long-term care for strokesurvivors with multimorbidity through stakeholderengagement✓ Stakeholderengagement;Co-production Not clearSims95 2011 UK How to develop a patient and carer advisory groupin stroke care research✓ Patient and careradvisory group in publicinvolvementNot clearSkolarus96 2013 USA Individual and community determinants of calling911 for stroke among African Americans in an urbancommunity✓ CBPR YesContinuedHoekstraetal.SystematicoverviewsofpartnershipprinciplesandstrategiesidentifiedfromhealthresearchTheJournalofSpinalCordMedicine2023VOL.46NO.4621Table 2 ContinuedFirst author Year Country TitlePartnershipinformation type* Partnership terms Co-authorship**Descr Refl Eval Key term Other termsSkolarus97 2011 USA Community-based participatory research: a newapproach to engaging community members torapidly call 911 for stroke✓ CBPR YesMS (n = 5)Goodwin98 2018 UK Involving Members of the Public in HealthEconomics Research: Insights from Selecting HealthStates for Valuation to Estimate Quality-Adjusted Life-Year (QALY) Weights✓ ✓ Public involvement Not clearMulligan99 2017 NewZealandA fatigue management programme for persons withmultiple sclerosis: development, theory and practicalconsiderations✓ PAR YesPuhan100 2018 Switzerland A digitally facilitated citizen-science driven approachaccelerates participant recruitment and increasesstudy population diversity✓ ✓ Citizen-science drivenapproachCitizen or patientengagementYesSynnot62 2018 Australia Consumer engagement critical to success in anAustralian research project: reflections from thoseinvolved✓ ✓ Consumer engagement YesSynnot101 2018 Australia Producing an evidence-based treatment informationwebsite in partnership with people affected bymultiple sclerosis✓ Consumer participationin researchYesAmputation(n = 2)Ehde10 2013 USA Developing, Testing, and Sustaining RehabilitationInterventions Via Participatory Action Research✓ PAR YesVan Twillert102 2014 TheNetherlandsKnowledge Translation and Implementation SpecialSeries. Incorporating Self-Management in ProstheticRehabilitation: Case Report of an IntegratedKnowledge-to-Action Process✓ PAR Engaged scholarship;co-creationYesCerebral Palsy(n = 2)Bartlett58 2017 Canada Moving from parent “consultant” to parent“collaborator”: one pediatric research team’sexperience✓ ✓ CollaborativepartnershipsPAR; family-centeredresearchYesWintels103 2018 TheNetherlandsHow do adolescents with cerebral palsy participate?Learning from their personal experiences✓ Participatory Research; Co-creation YesParkinson’sdisease (n = 1)Staley104 2017 UK The impact of involvement on researchers: a learningexperience✓ ✓ ✓ Patient/publicinvolvementYesWheelchair users(n = 1)Aldersey105 2018 Canada Barriers and Facilitators for Wheelchair Users inBangladesh: A Participatory Action Research Project✓ PAR YesNotes: *Partnership information type: description (Descr), reflection (Refl), and/or evaluation (Eval) of a research partnership approach. **Co-authorships: yes indicates that one or moreresearch users were listed as co-author. Not clear indicates that there was not a clear indication that a research user was listed as co-author based on the information in the article and/orco-authors’ affiliations. No indicates that there was no indication of a co-authorship as the article was published by a single author who was identified as a researcher and affiliated to anacademic organization. CBPR = Community-based participatory research; PAR = Participatory Action Research; IKT = Integrated Knowledge Translation.Hoekstraetal.SystematicoverviewsofpartnershipprinciplesandstrategiesidentifiedfromhealthresearchTheJournalofSpinalCordMedicine2023VOL.46NO.4622Included articles were related to: SCI (n = 13), stroke(n = 15), MS (n = 5), Amputation (n = 2), CP (n =2), Parkinson (n = 1), and wheelchair users (n = 1).The included articles were qualitative studies (n = 15),case studies/reports (n = 12), non-experimental cross-sectional studies (n = 5), mixed methods studies (n =3), intervention trial design (n = 1), implementationstudy (n = 1), and prospective observational study(n = 1). Twenty-two articles (56%) described a researchpartnership approach without reflecting or evaluatingthe research partnership approach or collaborativeresearch activities. Thirteen articles (33%) included areflection on collaborative research activities, and 7articles (18%) included an evaluation.The extracted information on the timing and natureof research user engagement in main phases of theresearch process (i.e. planning, conduct, dissemination)is presented in Appendix 7. Research users were mostfrequently engaged in the planning phase of theresearch process (31 out of 39, 79%) followed by the dis-semination phase (25 out of 39, 64%), and conductphase (24 out of 39, 61%). A detailed overview of theextracted study and partnership characteristics is avail-able on OSF – Table I.PrinciplesAlthough we extracted 110 principles from 31 articles(OSF-Table II), most of the articles did not providedetails on how and what principles were used to plan,conduct and/or disseminate their research in partner-ship. The 8 articles that did not include any extractableprinciples were those that described a research partner-ship approach without reflecting or evaluating on it.The principles were synthesized into 13 overarchingprinciples related to 5 different processes (Table 3).The 5 processes are:• Relationship between researchers and research users• Co-production of knowledge• Meaningful research user engagement• Capacity building• Communication between researchers and researchusersThe coding manuals and principle-codes identifiedwithin each of the included studies are available onTable 3 A systematic overview of partnership principles.Processes Overarching principlesContextSCI(n = 13)Stroke(n = 15)MS(n = 5)Other(n = 6)Relationships betweenresearchers and researchusersTrust, mutual respect, and/or credibility asfoundations for building and maintaining partnershiprelationships.6/13(46%)4/15(27%)3/5(60%)2/6(33%)Value and/or respect for everyone’s expertise andinput.1/13(8%)5/15(33%)2/5(40%)1/6(17%)Acknowledge diversity, strive for representation and/or inclusivity.2/13(15%)5/15(33%)1/5(20%)1/6(17%)Empower community members. 2/13(15%)3/15(20%)0 1/6(17%)Co-production of knowledge Research users should be involved in any phases ofthe research process.3/13(23%)9/15(60%)2/5(40%)1/6(17%)Findings should be shared to encourage theirawareness and use.4/13(31%)3/15(20%)1/5(20%)0Co-ownership of the research process and products,and sharing decision making and power related toresearch activities.6/13(46%)3/15(20%)3/5(60%)3/6(50%)Meaningful research userengagementPragmatism and/or flexibility in the collaborativeresearch activities and/or open for research users’ideas.2/13(15%)3/15(20%)0 1/6(17%)Undertake research relevant to research users withlived experience.3/13(23%)2/15(14%)0 1/6(17%)Partnerships are mutually beneficial. 1/13(8%)3/15(20%)1/5(20%)0Capacity building Capacity building among research users. 3/13(23%)1/15(7%)0 1/6(17%)Researchers and research users learn from each otherand share expertise and knowledge.3/13(23%)5/15(33%)0 1/6(17%)Communication betweenresearchers and researchusersOpen and/or ongoing communication and mutualunderstanding.1/13(8%)1/15(7%)0 1/6(17%)Notes: SCI = Spinal cord injury; MS =Multiple Sclerosis.Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4 623OSF-Table II. The most frequently identified principlesrelated to the following overarching principles:• Trust, mutual respect, and/or creditability as foun-dations for building and maintaining partnershiprelationships (15 of 39 articles, 38%)• Research users should be involved in any phases of theresearch process (15 of 39 articles, 38%)• Co-ownership of the research process and products andsharing decision making and power related to researchactivities (15 of 39 articles, 38%).From 6 articles (SCI, stroke, MS, CP),35,57–61 we ident-ified 10 or more partnership principles per article. Thearticle with the highest number of identified researchpartnership principles was published by Bartell et al.(2017)58, in which the authors described their collabora-tive research experiences with parents of young peoplewith CP.StrategiesWe extracted 58 partnership strategies from the 39included articles (OSF-Table III). After combiningstrategy-codes with similar meaning, we identified 32strategies that could be applied throughout the researchprocess (Table 4) and 26 strategies related to specificphases of the research process (Table 5). While allincluded articles provided at least one example of aresearch partnership strategy, the extent to whichauthors provided example strategies varied largely. In31% of the articles (12 out of 39), we identified 10 ormore different research partnership strategies. Thearticles with the highest number of identified researchpartnership strategies (i.e. >20 different strategies)were derived from articles about stroke (n = 2),59,60MS (n = 1) 62 and CP (n = 1).58 The strategies thatcould be applied throughout the research processrelated to the following 8 categories:• Partnership representation• Ongoing monitoring and evaluation of collaborativeresearch activities• Development of norms, rules and expectations• Fostering the collaboration and communicationprocesses• Communication methods (verbal, written, visual)• Education and training• Time and resources• Practical supportOf the strategies that could be applied throughout theresearch process, the most frequently reported strategywas having structured meetings (face-to-face, phone,or conferences calls) between researchers and researchusers (25 out of 39 articles, across all research areas/groups). The strategies related to specific phases ofthe research process, were grouped into strategiesrelated to the planning of the research, conduct of theresearch or dissemination and application of theresearch (Table 5).DiscussionThis scoping review is the first that provides systematicoverviews of research partnership principles (i.e. normsor values) and strategies (i.e. observable actions) from39 included articles that described, reflected and/orevaluated a research partnership about SCI or relatedhealth conditions. In general, the majority of theincluded articles provided limited details on which part-nership principles and strategies were used to plan,conduct and/or disseminate the research. From theincluded articles in this scoping review, the vastmajority of the research partnership approaches wereSCI-related research in North America and stroke-related research in UK.Partnership principlesWe extracted >100 principles, which we synthesized into13 overarching principles. In terms of the synthesizedoverarching principles, the findings from this scopingreview confirmed the findings from our previousrelated review of reviews.17 We were able to organizethe principles in the same way (i.e. using similar pro-cesses or categories) as we did in our previous review,suggesting that these processes may be used as a firststep to building a classification system for research part-nership principles. Furthermore, the most frequentlyreported principles identified in the current scopingreview aligned with the findings from the previousreview of reviews and interview study with SCI researchpartnership champions and related to “building andmaintaining relationships”, “research user engagement inthe research process”, and “co-ownership and sharingdecision-making”. These confirming results may suggestthat these principles are relevant for general researchpartnership approaches and not specific for a researcharea, population or type of partnership.While we identified some differences in principlesreported in the current scoping review compared tothe results of the review of reviews17 and other com-monly accepted principles for community engage-ment63, we did not identify specific partnershipprinciples that are clearly unique for SCI research part-nerships (see Appendix 8). While this was in contrastwith our expectations, the findings align with recentlypublished IKT Guiding Principles for Conducting andDisseminating SCI research in partnership.22 These 8Guiding Principles, informed by this review and otherHoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4624data sources,17,64 are also formulated in a broad waywithout specifically highlighting potential uniquecharacteristics of SCI research partnership. Together,this suggest that many of the identified principlesfrom this scoping review may be used to guide avariety of partnerships with different types of researchusers, in different contexts, and in different researchareas. However, given the limited details reported onpartnership principles, these findings need to be inter-preted with caution and more research is needed.Partnership strategiesWe identified 58 research partnership strategies from theincluded articles. Our findings from the current scopingreview align with the findings from our previous relatedreview of reviews,17 previous literature reviews focusingon partnership strategies within and outside disabilityand rehabilitation context,9,20,65 and an existing frame-work to advance reporting of patient engagement inrheumatology research.66 This scoping review adds tothe existing partnership literature by providing aTable 4 A systematic overview of strategies that could be applied throughout the research process.Categories Examples strategiesContextSCI Str MS OthPartnership representation - Use of targeted strategy to identify/recruit research users (e.g.researcher send out an email about the research idea)✓ ✓ ✓- Recruit research user(s) via professionals network or communitynetwork✓ ✓ ✓ ✓- Researcher gets out into relevant communities and gets involved ✓ ✓- Research users or funding agencies initiate the partnership ✓- Selection of research users from different disciplines, sectors andbackgrounds (diverse team)✓ ✓ ✓ ✓Ongoing monitoring and evaluation ofcollaborative research activities- Monitor and/or evaluate collaborative research activities ✓ ✓ ✓ ✓- Use a framework to guide the collaborative research activities ✓ ✓Development of norms, rules andexpectations- Development and agreement of norms, rules and/or expectations ✓ ✓ ✓- Define level of research users’ commitment/ engagement (e.g.consultation, collaboration, patient- or public-directed)✓ ✓- Develop shared goals common mission ✓Fostering the collaboration andcommunication processes- Include a knowledge broker or other facilitator to support thecollaborative process (e.g. facilitate conversations)✓ ✓ ✓- Use different tools to ensure that research users understand and/or participate in everything (e.g. flipcharts, communication tools)✓- Researchers read collection of autobiographical life stories ✓- Provide opportunities for people to ask questions before meetingsand/or provide pre-meeting information materials✓ ✓ ✓- Have continuous dialogue/ maintain communication ✓ ✓- Have meetings at times and location convenient for research users ✓ ✓ ✓ ✓- Have informal meetings (to get to know each other) ✓ ✓- Adopt a common taxonomy / language ✓ ✓Communication methods (verbal,written, visual)- Have structured meetings (face-to-face, phone, conference calls) ✓ ✓ ✓ ✓- Gather information via focus groups or workshops or brainstormsessions with research users✓ ✓ ✓ ✓- Gather information via interviews or consultations ✓ ✓- Gather information via surveys or email ✓ ✓ ✓ ✓- Provide online platforms for interaction / web portal ✓ ✓- Gather information via visual and/or active methods (e.g. photovoice)✓ ✓- Use consensus methods (e.g. nominal group techniques/ Delphiapproaches)✓ ✓Education and training - Educate and/or train research users (e.g. training in researchethics, interview techniques)✓ ✓ ✓- Educate and/or train researchers ✓ ✓- Provide education and/or training opportunities on collaborativeresearch for all partners (e.g. training in CBPR principles andprocesses)✓Time and resources - Funding for the collaborative research activities ✓ ✓ ✓- Offer financial support to research users ✓ ✓ ✓ ✓- Allow flexible handling of time schedules ✓Practical support - Offer practical support ✓ ✓ ✓ ✓Notes: SCI = Spinal Cord Injury; Str = Stroke; MS = Multiple Sclerosis; Oth = Other population. A ✓ indicates that the strategy hasbeen identified in at least one article related to the specific population (SCI, Stroke, MS, or Other). The order of the categories andexample strategies does not represent importance or relates to the frequencies.Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4 625method to extract and organize research partnershipstrategies, which could be evolved towards a classificationsystem. We used our consensus-based guiding frame-work12 including a common definition to identifyresearch partnership strategies from existing literatureand organized them into strategies applied at specificphases of the research phase and those that can beapplied throughout the research. While we do not knowwhich strategies would work the best under which cir-cumstances, our findings may help researchers, trainees,and research users to think through, select, report onstrategies that they will use or have used to work togetherin partnership, within and beyond SCI research.Scientific and practical implicationsThe findings from this scoping review have importantscientific and practical implications. To the researchpartnership literature, we add insight into potentialunderlying and explanatory partnership processes, interms of principles and strategies. By presentingsystematic overviews of principles and strategies, ourfindings may be used to develop a classificationsystem that can provide reporting and evaluation gui-dance. By doing so, we hope that this scoping reviewwill create awareness among researchers, trainees, andresearch users to think about how to plan, conduct,and disseminate research in partnership, how toreport on it, and how to evaluate quality partnerships.Subsequently, improving the reporting and evaluationof partnership processes will help to understand andexplain partnership outcomes and impacts.For SCI researchers, trainees, and research users whoengage in research partnerships, the findings from thisscoping review can be used to plan, conduct, and evaluatetheir collaborative research activities (e.g. how and whichprinciples and strategies to adopt when). More specifi-cally, the overviews of principles and strategies providedin this review have informed and can inform the develop-ment of resources relevant for (SCI) research partnerships.While additional research efforts (e.g. consensusTable 5 A systematic overview of strategies that are specific for a phase in the research process.Research phase Examples strategiesPopulationEngagement of research users in: SCI Str MS OthPlanning the research Engagement of research users in the planning of research:* ✓ ✓ ✓ ✓- grant writing / grant preparation ✓ ✓ ✓- identifying and/or prioritizing relevant topics for the research agenda ✓ ✓ ✓ ✓- selecting the research topic or identifying or refining the researchquestion✓ ✓ ✓- developing the study proposal or protocol ✓ ✓ ✓- assessing, developing or refining research instruments (e.g.questionnaires, interview guides)✓ ✓ ✓ ✓- developing the informed consent and other participant information ✓ ✓Conduct the research Engagement of research users in conducting the research:* ✓ ✓ ✓ ✓- recruiting participants ✓ ✓ ✓ ✓- collecting data phase ✓ ✓ ✓- conducting interviews or supervising focus groups/workshops ✓ ✓- reviewing the literature ✓ ✓ ✓ ✓- analyzing the data ✓ ✓ ✓ ✓- interpreting the findings ✓ ✓ ✓ ✓Dissemination and application of theresearchEngagement of research users in disseminating the research:* ✓ ✓ ✓ ✓- writing reports or scientific papers ✓ ✓- knowledge translation (KT) activities (e.g. providing feedback on draftreports / KT summaries)✓ ✓ ✓ ✓- co-authoring outputs (e.g. a scientific paper) ✓ ✓- approving of publications or reports ✓ ✓- advising, formulating and implementing action plans (disseminationplans)✓ ✓ ✓- developing key messages ✓- developing practice and policy recommendations ✓- translating scientific data into comprehensible research findings ✓ ✓ ✓ ✓- communicating the findings / conference presentations ✓ ✓ ✓- developing of tools and resources (e.g. websites) ✓- establishing the future research agenda and/or identifying futureresearch gaps✓ ✓Notes: SCI = Spinal Cord Injury; Str = Stroke; MS =Multiple Sclerosis; Oth = Other population. A ✓ indicates that the strategy hasbeen identified in at least one article related to the specific context (SCI, Stroke, MS, or Other). *These rows illustrate the engagementof research users in the specific research phase. A ✓ indicates that at least one strategy was identified to engage research users in thespecific phases of the research (planning, conduct, and dissemination).Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4626discussion/surveys/interviews) are needed to developsuch resources to understand what principles and strat-egies should be used under which circumstances, Table 6provides summarizing guiding steps and links toadditional resources.9,20,22,42,64,66–71LimitationsSome limitations of our scoping review need to beaddressed. First, there was a large variation in theextent to which authors report on whether and howthey have worked together in partnership. As such,our findings are limited by what was reported in theincluded articles. We also did not verify our findingswith authors of the included articles. Second, we mayhave missed relevant articles due to a lack of reportingon partnership information or because they were notcaptured by our search strategy. In line with our prag-matic approach and the primary aims of this scopingreview (i.e. providing an overview of principles andstrategies), we acknowledge that we may have missedarticles. We did not do an in-depth hand-search tocapture any potentially missed articles. Despite theselimitations, we were still able to identify a largenumber of partnership principles and strategies from avariety of articles relevant for SCI research partner-ships. Third, the overviews of the principles andstrategies are our reflection of the literature. Othergroups may have synthesized the findings differently.We also did not report on guiding principles for researchpartnerships. Instead, we identified principles thatcould be used to guide SCI research partnerships. Todevelop guiding principles for research partnerships,additional community-engaged efforts are needed toensure the guiding principles would be relevant anduseful for specific groups of end-users. Lastly, the leadauthors (FH, HLG) as well as our panel (SCIGuiding Principles Consensus Panel) have a specificinterest in SCI research. As we were aware of manyresearch partnership projects conducted in NorthAmerica, it is possible that we were more likely to ident-ify and include studies related to SCI research partner-ships compared to research partnerships related toother populations. To limit our biases, we used a sys-tematic process to identify related articles (e.g. extensivesearch strategy, clear eligibility criteria, screening induplicate). To enhance transparency, we publisheddetails of our processes on OSF.Future directions and gaps in the literatureBased on the findings from this scoping review, we sum-marized future directions for SCI research partnershipapproaches.Table 6 Initial guidance for using research partnership principles and strategies when planning, conducting and/ordisseminating SCI research in partnership with research users.Guiding steps DescriptionAdditionalresources1 Determine the type of research partnership approachthat aligns with your partnership orientation,historical roots and engagement processes.There are differences in partnership orientation,historical roots and engagement processes betweendifferent types of research partnership approaches(e.g. CBPR, PAR, IKT)67,68,702 Select and/or develop guiding principles for yourpartnership projectGuiding principles can be selected or developed ona partnership- either at a project-level (e.g. for aspecific project) or for a specific context (e.g. theNorth American SCI IKT Guiding Principles). It isimportant that all involved agree upon and adopt theguiding principles.22,36,39,69www.iktprinciples.com3 Operationalize the principles and select partnershipstrategies that align with the selected principles andensure that these principles are guiding thepartnerships.The partnership team can use the findings from thisscoping review and related data sources tooperationalize the principles and select strategiesthat align with these principles. An example of astrategy that may facilitate a principle on “co-ownership of research products” is that researchusers are listed as a co-author on the scientificpublication (i.e. strategy).17,22,644 Differentiate between strategies that could beapplied throughout the research process and thosespecific for a research phase.Table 4 provides an overview of identified strategiesthat could be applied throughout the researchprocess and Table 5 provides an overview ofstrategies specific for a research phase.9,17,20,65,665 Communicate, monitor, reflect and evaluate youradopted partnership principles and strategies.17,22Notes: CBPR = Community-based participatory research; PAR = Participatory Action Research; IKT = Integrated KnowledgeTranslation.Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4 627• More consistency and coherency in partnership terms.Our findings confirmed findings from previousreviews9,15–17,72 that there is a large variation in useof research partnership terms. There is a need for amore consistent way of describing and reporting onthe research partnership approaches and processes.25,42SCI researchers and research users should be aware ofthe different underlying motivations and sociallocations of different types of research partnershipapproaches.67,68 Nguyen et al.67 published an overviewof different research partnership terms and definitions,as well as key differences and similarities betweendifferent types of research partnership approaches.Using this and other overview articles,67,68,73 mayhelp partnership teams to describe, reflect, and evalu-ate on their research partnership approach in more aconsistent and coherent way.• Better reporting on partnership principles and strategies.In line with previous reviews on research partnershipsapproaches within and beyond SCI research,9,17 wefound a large variation in the extent to which authorsreport on how they have worked together in partnership.Hamilton et al.66 provides reporting guidance for patientengagement projects in the area of rheumatology bysummarizing key components of patient engagement(how, when and why). Similar reporting guidance isneeded for SCI research partnerships to better andmore systematically report on partnership processes(i.e. principles and strategies) and partnership character-istics (e.g. expertise, roles, gender identity and expression,sex assigned at birth, ethnicity, age),74 which will beessential to advance our understanding of partnershipoutcomes and impacts (i.e. how, when and why partner-ships result in positive outcomes and impact).• Linking research partnership strategies to principles. Nostudies were identified that explicitly provided infor-mation on which strategies could or should be usedto adopt certain principles (i.e. linking principles andstrategies). Linking strategies to principles maysupport partnership teams to enact to certain principles(e.g. IKT Guiding Principles). Future research shouldfocus on identifying which strategies should or couldbe used to help teams enact to certain principles byconducting primary research studies (e.g. interviews,surveys, consensus methods) rather than literaturereviews. Similarly, limited information is available onhow and what principles and strategies should orshould not co-occur. Future research should focus onstudying how and what combinations of principlesand/or strategies could contribute to positive partner-ship outcomes and impacts. Subsequently, these newinsights can then be used to develop evidence-basedtools and resources to support the implementation ofthe new SCI IKT Guiding Principles (www.iktprinciples.com) and/or improve the guidance toSCI research partnerships.ConclusionWe provided systematic overviews of partnership prin-ciples and strategies that could be used by researchersand research users who want to work in partnershipto plan, conduct and/or disseminate their SCI research.The findings informed the development of the new SCIIntegrated Knowledge Translation Guiding Principles(www.iktprinciples.com) and will support theimplementation of these Principles within the SCIresearch system.AcknowledgementsThe authors would like to thank Harrison Grogan(HG) for assisting in data screening and extractionand Christine J. Neilson (CN) for her contribution tothe conceptual design and conduct of the search strat-egy. The members of the SCI Guiding PrinciplesConsensus Panel include: Heather L. Gainforth, ChrisMcBride, Kim Anderson, Hugh Anton, JohnChernesky, Susan Forwell, Jocelyn Maffin, KathleenMartin Ginis, W. Ben Mortenson, PeterAthanasopoulos, Rhonda Willms.Conflict of interestNo potential conflict of interest was reported by theauthor(s).Declaration of InterestThe authors do not have competing financial interestsin relation to the work. Of note, author (HLG) andthe SCI Guiding Principles Consensus Panel play a lea-dership role within the SCI Research System.FundingThis research is supported in part by the IKTRNetworkCanadian Institutes of Health Research FoundationGrant (FDN #143237), a Canadian Institutes ofHealth Research Project Grant (FRN: 156372), aMichael Smith Foundation for Health ResearchScholar Award for HG (Scholar Award #16910), andby the International Collaboration on RepairDiscoveries (F17–01540). KMS is supported by aCanada Research Chair in Integrated KnowledgeTranslation in Rehabilitation Sciences. None of thefunding bodies had a role in writing this manuscript, orin data collection, analysis or interpretation of the data.ORCIDFemke Hoekstra http://orcid.org/0000-0002-0068-652XIan D. Graham http://orcid.org/0000-0002-3669-1216Hoekstra et al. Systematic overviews of partnership principles and strategies identified from health researchThe Journal of Spinal Cord Medicine 2023 VOL. 46 NO. 4628Mathew Vis-Dunbar http://orcid.org/0000-0001-6541-9660Heather L. Gainforth http://orcid.org/0000-0002-3281-1110References1 Noonan VK, Wolfe DL, Thorogood NP, Park SE, Hsieh JT, EngJJ. Knowledge translation and implementation in spinal cordinjury: a systematic review. Spinal cord 2014;52(8):578–587.2 Barrable B, Thorogood N, Noonan V, Tomkinson J, Joshi P,Stephenson K, et al. Model for bridging the translational”valleys of death” in spinal cord injury research. J HealthcLeadersh 2014;6:15.3 Glasgow RE, Lichtenstein E, Marcus AC. 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Integrated knowledge translation
Spinal cord injury
Research partnership
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Stakeholder engagement
Principles and strategies
Knowledge synthesis
Systematic overviews of partnership principles and strategies identiﬁed from health research about spinal cord injury and related health conditions : A scoping review
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