Scoping review of models and frameworks of patient engagement in health services research.
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ABSTRACT: Objective
To count and describe the elements that overlap (ie, present in two or more) and diverge between models and frameworks of patient engagement in health services research. Our specific research question was 'what are the elements that underlie models and frameworks of patient engagement in health services research?'Design
Scoping review.Data sources
On 6-7 July 2021, we searched six electronic databases (ie, CINAHL, Cochrane Database of Systematic Reviews, Joanna Briggs Institute Evidence Based Practice Database, MEDLINE, PsycINFO and Scopus) and Google Scholar for published literature, and ProQuest Dissertations & Theses, Conference Proceedings Citation Index, Google, and key agencies' websites for unpublished (ie, grey) literature, with no date restrictions. These searches were supplemented by snowball sampling.Eligibility criteria
We included published and unpublished literature that presented (a) models or frameworks (b) of patient engagement (c) in health services research. We excluded articles unavailable as full text or not written in English.Data extraction and synthesis
Two independent reviewers extracted data from included articles using an a priori developed standardised form. Data were synthesised using both quantitative (ie, counts) and qualitative (ie, mapping) analyses.Results
We identified a total of 8069 articles and ultimately included 14 models and frameworks in the review. These models and frameworks were comprised of 18 overlapping and 57 diverging elements, that were organised into six conceptual categories (ie, principles, foundational components, contexts, actions, levels and outcomes) and spanned intrapersonal, interpersonal, process, environmental, and health systems and outcomes domains.Conclusions
There is little overlap between the elements that comprise existing models and frameworks of patient engagement in health services research. Those seeking to apply these models and frameworks should consider the 'fit' of each element, by conceptual category and domain, within the context of their study.
SUBMITTER: Chudyk AM
PROVIDER: S-EPMC9396146 | biostudies-literature | 2022 Aug
REPOSITORIES: biostudies-literature
Publications
Scoping review of models and frameworks of patient engagement in health services research.
Chudyk Anna Maria AM Horrill Tara T Waldman Celeste C Demczuk Lisa L Shimmin Carolyn C Stoddard Roger R Hickes Serena S Schultz Annette Sh AS
BMJ open 20220819 8
<h4>Objective</h4>To count and describe the elements that overlap (ie, present in two or more) and diverge between models and frameworks of patient engagement in health services research. Our specific research question was 'what are the elements that underlie models and frameworks of patient engagement in health services research?'<h4>Design</h4>Scoping review.<h4>Data sources</h4>On 6-7 July 2021, we searched six electronic databases (ie, CINAHL, Cochrane Database of Systematic Reviews, Joanna ...[more]
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| S-EPMC8318845 | biostudies-literature
Project description:BackgroundInvolving stroke patients in clinical research through patient engagement aims to ensure that studies are patient-centered, and may help ensure they are feasible, ethical, and credible, ultimately leading to enhanced trust and communication between researchers and the patient community. In this study, we have conducted a scoping review to identify existing evidence and gaps in SPSE.MethodsThe five-step approach outlined by Arksey and O'Malley, in conjunction with the Preferred Reporting Items for Scoping Reviews (PRISMA-ScR) guidelines, provided the structure for this review. To find relevant articles, we searched PubMed, Web of Science, and Embase databases up to February 2024. Additionally, the review team conducted a hand search using Google Scholar, key journals, and references of highly relevant articles. Reviewers screened articles, selecting eligible English-language ones with available full texts, and extracted data from them into a pre-designed table tested by the research team.ResultOf the 1002 articles initially identified, 21 proved eligible. Stakeholder engagement primarily occurred during the design phase of studies and within the studies using qualitative methodologies. Although the engagement of stakeholders in the research process is increasing, practice regarding terminology and principles of implementation remains variable. Researchers have recognized the benefits of stakeholder engagement, but have also faced numerous challenges that often arise during the research process.ConclusionThe current study identifies stakeholder groups and the benefits and challenges researchers face in implementing their engagement. Given existing challenges and limited specific models or frameworks, it is suggested to explore applied recommendations for stakeholder engagement in future studies, that may enhance stakeholder engagement, overcome obstacles, and unify researchers' understanding of engagement and implementation.
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Project description:ContextImplicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health research are important for a better understanding of these practices.ObjectiveThis study aimed to identify and analyze the existing qualitative scientific literature on the experiences of academic researchers involved in health research with patient engagement (PE).DesignA scoping review of the available literature with an inductive thematic synthesis, guided by the methodological framework of Arksey and O'Malley.Data collectionA search strategy was developed to include keywords relating to researchers, patient-partners, experiences, and the qualitative methodologies of the targeted studies. Five databases were searched using the EBSCO-host engine. The search results were screened by four reviewers to only include articles written in English on the topic of the experience of academic researchers having worked with PPs in health research based on qualitative studies or mixed-methods studies with a distinct qualitative section.AnalysisArticles included were charted for general information. All "results" sections were coded line by line. These codes were organized inductively to form descriptive and analytical themes. This led to the synthesis of the ideas found in the selected articles.ResultsThe search strategy yielded 7616 results, of which 2468 duplicates were removed. The remaining 5148 articles were screened, resulting in the exclusion of 5114 off-topic studies. The remaining 29 full-text articles were evaluated for inclusion from which 5 additional studies were identified. The final selection consisted of 11 articles that met all the criteria. These articles were published between 2009 and 2019. Five general themes inductively emerged from the analysis: the understanding of PE, motivations, contexts, attitudes, and practical aspects of PE that are central to researchers.ConclusionThis scoping review provides a better understanding of the experiences of researchers who have implemented patient partnerships in health research projects. Our findings reveal many positive elements central to health researchers' discourses about PE, but they provide insights into the challenges and postures of resistance. This knowledge can support the development of empirically sound improvements in PE practices.
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Project description:PurposeThis study is a scoping review of the different methods used to measure rurality in the health services research (HSR) literature.MethodsWe identified peer-reviewed empirical studies from 2010-2020 from seven leading HSR journals, including the Journal of Rural Health, that used any definition to measure rurality as a part of their analysis. From each study, we identified the geographic unit (e.g., county, zip code) and definition (e.g., Rural Urban Continuum Codes, Rural Urban Commuting Areas) used to classify categories of rurality. We analyzed whether geographic units and definitions used to classify rurality differed by focus area of studies, including costs, quality, and access to care. Lastly, we examined the number of rural categories used by authors to assess rural areas.FindingsIn 103 included studies, five different geographic units and 11 definitions were used to measure rurality. The most common geographic units used to measure rurality were county (n = 59, 57%), which was used most frequently in studies examining cost (n = 12, 75%) and access (n = 33, 57.9%). Rural Urban Commuting Area codes were the most common definition used to measure rurality for studies examining access (n = 13, 22.8%) and quality (n = 10, 44%). The majority of included studies made rural versus urban comparisons (n = 82, 80%) as opposed to focusing on rural populations only (n = 21, 20%). Among studies that compared rural and urban populations, most studies used only one category to identify rural locations (n = 49 of 82 studies, 60%).ConclusionGeographic units and definitions to determine rurality were used inconsistently within and across studies with an HSR focus. This finding may affect how health disparities by rural location are determined and thus how resources and federal funds are allocated. Future research should focus on developing a standardized system to determine under what circumstances researchers should use different geographic units and methods to determine rurality by HSR focus area.
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Project description:BackgroundEngaging users of health research, namely knowledge users, as partners in the research process may to lead to evidence that is more relevant to the users. This may optimize the uptake of evidence in healthcare practice, resulting in improved health outcomes or more efficient healthcare systems. However, barriers to involving knowledge users in the research process exist. Theories, models and frameworks may help guide the process of involving knowledge users and address barriers to engaging with knowledge users in research; however, there is little evidence identifying or describing the theories, models and frameworks of health research partnerships.ObjectivesIdentify and describe theories, models and frameworks of health research partnerships. Report on concepts of knowledge user engagement represented in identified theories, models and frameworks.MethodsWe conducted a scoping review. Database (MEDLINE, Embase, CINAHL, PCORI) and ancestry and snowball searches were utilized. Included articles were written in English, published between January 2005 and June 2021, specific to health, a research partnership, and referred to a theory, model or framework. No critical appraisal was conducted. We developed a coding framework to extract details related to the publication (e.g. country, year) and theory, model or framework (e.g. intended users, theoretical underpinning, methodology, methods of development, purpose, concepts of knowledge user engagement). One reviewer conducted data extraction. Descriptive statistics and narrative synthesis were utilized to report the results.ResultsWe identified 21 874 articles in screening. Thirty-nine models or frameworks were included in data analysis, but no theory. Two models or frameworks (5%) were underpinned by theory. Literature review was the method (n = 11, 28%) most frequently used to develop a model or framework. Guiding or managing a partnership was the most frequently reported purpose of the model/framework (n = 14, 36%). The most represented concept of knowledge user engagement was principles/values (n = 36, 92%).ConclusionsThe models and frameworks identified could be utilized by researchers and knowledge users to inform aspects of a health research partnership, such as guidance or implementation of a partnership. Future research evaluating the quality and applicability of the models and frameworks is necessary to help partners decide which model or framework to implement.
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Project description:IntroductionOver the last 20 years, the pharmacist's role in healthcare has evolved, moving towards patient-centred care, collaboration and medication therapy management. Patient engagement in research is similarly being recognised as a transformative approach to healthcare due to its positive impact on outcomes and research relevance. However, patient engagement in pharmacy practice research is nascent. Therefore, we present a protocol for a scoping review to map the current state of patient engagement in pharmacy practice research, identifying its extent, range, nature, barriers, facilitators, impacts and gaps.Methods and analysisThis protocol was developed in collaboration with persons with lived experience (PWLE). The scoping review will be conducted using established methodological frameworks and guided by the Best Practice Guidance and Reporting Items for the Development of Scoping Review Protocols and the Guidance for Reporting Involvement of Patients and the Public (GRIPP2) checklists. A comprehensive search involving three large databases, Medline (Ovid; 1946-Present), Embase (Ovid; 1974-Present) and Scopus (Elsevier), grey literature sources, forward and backward reference checking and consultation will be completed to retrieve the relevant literature. We will include published and unpublished research related to pharmacy practice that adopts patient engagement in research approach. Full-text screening will occur to determine eligibility for inclusion. Data will then be charted using a comprehensive extraction form. Qualitative data will be synthesised using basic qualitative content analysis, and quantitative data will be analysed using descriptive statistics. Regular meetings with PWLE and the research team will guide data analysis, interpretation and dissemination.Ethics and disseminationEthics approval was not required for this protocol as we did not collect participant data. Findings may be disseminated through peer-reviewed publications, conference presentations, social media and knowledge user meetings, as informed by the perspectives of PWLE. Knowledge gained from this review will inform the development of strategies that support patient engagement, advance pharmacy practice research and have the potential to improve health outcomes and patient experiences.
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Project description:BackgroundConsumer engagement is increasingly recognized as an instrumental component of health research, with many institutions and international bodies mandating it as part of the research and funding process. Given an increasing utilization of consumer engagement in health research, it is critical to identify the literature which support its value and tools that capture successful outcomes. To develop an overview of the literature, we conducted an umbrella scoping review exploring important outcomes of consumer engagement in health research combined with a scoping review of relevant frameworks. Specifically, we aimed to capture outcomes which reflect authentic and meaningful consumer engagement.MethodsFour databases (PubMed, Embase, CINAHL and Cochrane Library) were searched using key search terms. Records were included if they were review articles or frameworks that addressed outcomes of consumer engagement in health research. Data was analyzed using descriptive statistics and an inductive qualitative content analysis. Identified outcomes were sorted based on the three most relevant stakeholder groups (consumer, researcher, institution).ResultsA total of twenty articles that explored a variety of health disciplines were included. We identified fifteen measurable outcomes of consumer engagement in health research. Eight core outcomes were relevant to all stakeholder groups, and were considered fundamental to authentic consumer engagement including (1) trust, (2) empowerment, (3) respect, (4) confidence in the outcomes of the research, (5) transparency of the research process, (6) satisfaction with the consumer engagement program, (7) knowledge and experiences of consumers, and (8) degree of consumer engagement. Outcomes pertaining to specific stakeholder groups included representativeness and diversity of the consumer groups, research relevance to consumers, funding opportunities, quality/validity of the research, recruitment/retention rates, translation and dissemination of research, and interpretation of results.ConclusionThis review identified key measurable outcomes that could be captured when evaluating the impacts of consumer engagement on health research and the success of consumer engagement programs. All outcomes identified were relatively underexplored within the literature, and inadequately and/or inconsistently evaluated amongst studies. Future research should consult all stakeholder groups to identify outcomes perceived to be reflective of optimal consumer engagement.
| S-EPMC9621387 | biostudies-literature
Project description:IntroductionPatient navigation, a complex health intervention meant to address widespread fragmentation across the healthcare landscape, has been widely adopted internationally. This rapid uptake in patient navigation has led to a broadening of the service's reach to include those of different social positions and different health conditions. Despite the popularity and prevalence of patient navigation programmes, the extent of patient involvement and/or partnership in their construction has yet to be articulated. This scoping review will explore and describe the extent to which patients have been engaged in the development and/or implementation of patient navigation programmes to date.Methods and analysisThis scoping review will adhere to the Arksey and O'Malley framework for conducting scoping reviews. The electronic databases MEDLINE, CINAHL, EMBASE, PsycINFO, SocINDEX and Scopus were searched in September 2023 using terms related to patient navigation and programme implementation. Inclusion criteria stipulate that the studies must: (1) include an intervention labelled as 'navigation' in a healthcare setting and (2) describe patient engagement in the design, development and/or implementation process of said patient navigation programme. To assess study eligibility, two reviewers will independently read through the titles and abstracts, followed by the full texts, of each study identified from the search strategy to determine whether they meet inclusion criteria. Reviewers will then extract data from the included studies, present descriptive study characteristics in tables, and perform qualitative content analysis.Ethics and disseminationThis review does not require ethics approval as data will be collated exclusively from peer-reviewed articles and thesis dissertations. A manuscript summarising the results of the review will be written and submitted to a peer-reviewed journal for publication. The review will map aspects of programme development that have repeatedly utilised patient perspectives and areas where engagement has lagged. This review will also depict how patient engagement varies across programme characteristics.
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Project description:BACKGROUND: A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients' concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? METHODS: We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. RESULTS: We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. CONCLUSIONS: Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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Project description:BackgroundDigital health interventions (DHIs) are a central focus of health care transformation efforts, yet their uptake in practice continues to fall short of their potential. In order to achieve their desired outcomes and impact, DHIs need to reach their target population and need to be used. Many factors can rapidly intersect between this dynamic of users and interventions. The application of theories, models, and frameworks (TMFs) can facilitate the systematic understanding and explanation of the complex interactions between users, practices, technology, and health system factors that underpin research questions. There remains a gap in our understanding of how TMFs have been applied to guide the evaluation of DHIs with real-world health system operations.ObjectiveThis study aims to map TMFs used in studies to guide the evaluation of DHIs. The objectives are to (1) describe the TMFs and the constructs they target, (2) identify how TMFs have been prospectively used (ie, their roles) in primary studies to evaluate DHIs, and (3) to reflect on the relevance and utility of our findings for knowledge users.MethodsThis scoping review was conducted in partnership with knowledge users using an integrated knowledge translation approach. We included papers (eg, reports; empirical quantitative, qualitative, and mixed methods studies; conference proceedings; and dissertations) if primary insights resulting from the application of TMFs were presented. Any type of DHI was eligible. Papers published from 2000 and onward were mainly identified from the following databases: MEDLINE (Ovid), CINAHL Complete (EBSCOhost), PsycINFO (Ovid), EBM Reviews (Ovid), and Embase (Ovid).ResultsA total of 156 studies published between 2000 and 2022 were included. A total of 68 distinct TMFs were identified across 85 individual studies. In more than half (85/156, 55%) of the included studies, 1 of following 6 prevailing TMFs were reported: Consolidated Framework for Implementation Research (n=39); the Reach, Effectiveness, Adoption, Implementation, and Maintenance Framework (n=17); the Technology of Acceptance Model (n=16); the Unified Theory on Acceptance and Use of Technology (n=12); the Diffusion of Innovation Theory (n=10); and Normalization Process Theory (n=9). The most common intended roles of the 6 TMFs were to inform data collection (n=86), to inform data analysis (n=69), and to identify key constructs that may serve as barriers and facilitators (n=52).ConclusionsAs TMFs are most often reported to be applied to support data collection and analysis, researchers should consider more clearly synthesizing key insights as practical use cases to both increase the relevance and digestibility of their findings. There is also a need to adapt or develop guidelines for better reporting DHIs and the use of TMFs to guide evaluation. Hence, it would contribute to ensuring ongoing technology transformation efforts are evidence and theory informed rather than anecdotally driven.
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