The Use of Patient Stories as a Knowledge Translation Strategy to Facilitate the Sustainability of Evidence-Based Interventions (EBIs) in Healthcare

Background: Patient stories are real-life experiences told from a patient’s or their family’s perspective. In the past, patient stories have served many purposes in healthcare, such as spreading knowledge, educating providers, or conveying the patient experience. Patient stories are increasingly used as a knowledge translation (KT) strategy to improve the uptake of evidence-based interventions (EBIs) into clinical healthcare practices by embodying the patient experience. However, little is known about the use of patient stories to support the sustainability of EBIs in healthcare practices. There is a need to understand how patient stories can be used for the long-term use and benefit of EBIs in practice. Objective: Our research explored how patient stories facilitate the sustainability of EBIs in healthcare. Methods: We conducted a secondary thematic analysis of 20 qualitative interviews from a realist evaluation previously published by Flynn et al. Results: We found that the use of patient stories as a KT strategy for the sustainability of two EBIs created buy-in towards new research, motivated and encouraged staff to continue to engage with the intervention long-term and facilitated the spread of the EBI. Our findings demonstrate how sharing patient stories digitally or through learning collaboratives and online toolkits, can facilitate sustainability by enabling patient stories to be saved and distributed to a wide audience at any time. Despite the potential use of patient stories to support long-term research use, more research is needed to understand how effective patient stories are at supporting the long-term use of research evidence aimed to improve healthcare practice

Systematic overviews of partnership principles and strategies identified from health research about spinal cord injury and related health conditions:A scoping review

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).Conclusion: We provided systematic overviews of principles and strategies for research partnerships. These could be used by researchers and research users who want to work in partnership to plan, conduct and/or disseminate their SCI research. The findings informed the development of the new SCI Integrated Knowledge Translation Guiding Principles (www.iktprinciples.com) and will support the implementation of these Principles within the SCI research system.</p

How are health research partnerships assessed? A systematic review of outcomes, impacts, terminology and the use of theories, models and frameworks

BACKGROUND: Accurate, consistent assessment of outcomes and impacts is challenging in the health research partnerships domain. Increased focus on tool quality, including conceptual, psychometric and pragmatic characteristics, could improve the quantification, measurement and reporting partnership outcomes and impacts. This cascading review was undertaken as part of a coordinated, multicentre effort to identify, synthesize and assess a vast body of health research partnership literature. OBJECTIVE: To systematically assess the outcomes and impacts of health research partnerships, relevant terminology and the type/use of theories, models and frameworks (TMF) arising from studies using partnership assessment tools with known conceptual, psychometric and pragmatic characteristics. METHODS: Four electronic databases were searched (MEDLINE, Embase, CINAHL Plus and PsycINFO) from inception to 2 June 2021. We retained studies containing partnership evaluation tools with (1) conceptual foundations (reference to TMF), (2) empirical, quantitative psychometric evidence (evidence of validity and reliability, at minimum) and (3) one or more pragmatic characteristics. Outcomes, impacts, terminology, definitions and TMF type/use were abstracted verbatim from eligible studies using a hybrid (independent abstraction–validation) approach and synthesized using summary statistics (quantitative), inductive thematic analysis and deductive categories (qualitative). Methodological quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs (QATSDD). RESULTS: Application of inclusion criteria yielded 37 eligible studies. Study quality scores were high (mean 80%, standard deviation 0.11%) but revealed needed improvements (i.e. methodological, reporting, user involvement in research design). Only 14 (38%) studies reported 48 partnership outcomes and 55 impacts; most were positive effects (43, 90% and 47, 89%, respectively). Most outcomes were positive personal, functional, structural and contextual effects; most impacts were personal, functional and contextual in nature. Most terms described outcomes (39, 89%), and 30 of 44 outcomes/impacts terms were unique, but few were explicitly defined (9, 20%). Terms were complex and mixed on one or more dimensions (e.g. type, temporality, stage, perspective). Most studies made explicit use of study-related TMF (34, 92%). There were 138 unique TMF sources, and these informed tool construct type/choice and hypothesis testing in almost all cases (36, 97%). CONCLUSION: This study synthesized partnership outcomes and impacts, deconstructed term complexities and evolved our understanding of TMF use in tool development, testing and refinement studies. Renewed attention to basic concepts is necessary to advance partnership measurement and research innovation in the field. Systematic review protocol registration: PROSPERO protocol registration: CRD42021137932 https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=137932. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12961-022-00938-8

Interventions encouraging the use of systematic reviews by health policymakers and managers: A systematic review

<p>Abstract</p> <p>Background</p> <p>Systematic reviews have the potential to inform decisions made by health policymakers and managers, yet little is known about the impact of interventions to increase the use of systematic reviews by these groups in decision making.</p> <p>Methods</p> <p>We systematically reviewed the evidence on the impact of interventions for seeking, appraising, and applying evidence from systematic reviews in decision making by health policymakers or managers. Medline, EMBASE, CINAHL, Cochrane Central Register of Controlled Trials, Cochrane Methodology Register, Health Technology Assessment Database, and LISA were searched from the earliest date available until April 2010. Two independent reviewers selected studies for inclusion if the intervention intended to increase seeking, appraising, or applying evidence from systematic reviews by a health policymaker or manager. Minimum inclusion criteria were a description of the study population and availability of extractable data.</p> <p>Results</p> <p>11,297 titles and abstracts were reviewed, leading to retrieval of 37 full-text articles for assessment; four of these articles met all inclusion criteria. Three articles described one study where five systematic reviews were mailed to public health officials and followed up with surveys at three months and two years. The articles reported from 23% to 63% of respondents declaring they had used systematic reviews in policymaking decisions. One randomised trial indicated that tailored messages combined with access to a registry of systematic reviews had a significant effect on policies made in the area of healthy body weight promotion in health departments.</p> <p>Conclusions</p> <p>The limited empirical data renders the strength of evidence weak for the effectiveness and the types of interventions that encourage health policymakers and managers to use systematic reviews in decision making.</p

Towards the Development of Valid, Reliable, and Acceptable Tools for Assessing the Outcomes and Impacts of Health Research Partnerships

Background Researchers and their partners need access to high quality assessment tools to demonstrate the tangible outcomes and impacts of their work. As health research partnership approaches grow in popularity and mandated use, so too will the demand for tools to systematically measure their effects. This thesis surveyed literature spanning partnership traditions to locate and examine the globally available tools for assessing health research partnership outcomes and impacts. It systematically identified and assessed tools and tool characteristics (conceptual, psychometric, pragmatic), terminology, use of theories, models and frameworks, and examined the nature of outcomes and impacts arising from studies using tools with known characteristics. Methods We searched four electronic databases (Ovid MEDLINE, Embase, CINAHL+, PsychINFO) from inception to June 2021 without limits, and guided by an a priori protocol and search strategy. We retained studies involving a health research partnership, the development, use, and/or assessment of tools to evaluate partnership outcomes and impacts as a study aim, studies that reported empirical psychometric evidence (manuscript 2), and those with explicit conceptual foundations, empirical psychometric evidence, and pragmatic characteristics (manuscript 3). Study quality was assessed in both systematic reviews. Results Of 56123 total citations, we screened 36027 de-duplicated records, yielding 2784 full text records, ultimately retaining 169, 49, and 37 eligible studies, respectively. Studies were largely North America-centric, and published in English, after 2010. The tools we located were mostly bespoke (205); few had distinguishing conceptual, psychometric, and pragmatic features (58). The research revealed persistent measurement challenges across partnership traditions, including non-standard terminology, inconsistent reporting and use of term definitions, insufficient psychometric/pragmatic tools and a lack of quantitative methods and deliberate focus on tool development, testing, and use, among others. As compared with other historical reviews, very few of the identified studies and tools overlapped; yet the key messages regarding the need to evolve measurement and tool development were the same. Conclusions Dedicated, collaborative efforts among research partnership traditions are required to coordinate the advancement of partnership measurement and science, and to tackle complex outcomes and impacts measurement challenges in this rapidly expanding research field