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Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review.

ABSTRACT: BACKGROUND:When health service providers (HSP) plan to develop electronic health (eHealth) resources for health service users (HSU), the latter's involvement is essential. Typically, however, HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the eHealth context. Furthermore, it can be difficult to identify an established method to use, or determine how to work stepwise through any particular process. OBJECTIVE:We sought to summarize the evidence about participatory methods and frameworks used to engage HSU in the development of eHealth resources from the beginning of the design process. METHODS:We searched for studies reporting participatory processes in initial development of eHealth resources from 2006 to 2016 in 9 bibliographic databases: MEDLINE, EMBASE, CINAHL, PsycINFO, Emcare, Cochrane Library, Web of Science, ACM Guide to Computing Literature, and IEEE Xplore. From 15,117 records initially screened on title and abstract for relevance to eHealth and early participatory design, 603 studies were assessed for eligibility on full text. The remaining 90 studies were rated by 2 reviewers using the Mixed Methods Appraisal Tool Version 2011 (Pluye et al; MMAT) and analyzed with respect to health area, purpose, technology type, and country of study. The 30 studies scoring 90% or higher on MMAT were included in a detailed qualitative synthesis. RESULTS:Of the 90 MMAT-rated studies, the highest reported (1) health areas were cancer and mental disorders, (2) eHealth technologies were websites and mobile apps, (3) targeted populations were youth and women, and (4) countries of study were the United States, the United Kingdom, and the Netherlands. Of the top 30 studies the highest reported participatory frameworks were User-Centered Design, Participatory Action Research Framework, and the Center for eHealth Research and Disease Management (CeHRes) Roadmap, and the highest reported model underpinning development and engagement was Social Cognitive Theory. Of the 30 studies, 4 reported on all the 5 stages of the CeHRes Roadmap. CONCLUSIONS:The top 30 studies yielded 24 participatory frameworks. Many studies referred to using participatory design methods without reference to a framework. The application of a structured framework such as the CeHRes Roadmap and a model such as Social Cognitive Theory creates a foundation for a well-designed eHealth initiative that ensures clarity and enables replication across participatory design projects. The framework and model need to be clearly articulated and address issues that include resource availability, responsiveness to change, and the criteria for good practice. This review creates an information resource for future eHealth developers, to guide the design of their eHealth resource with a framework that can support further evaluation and development. TRIAL REGISTRATION:PROSPERO CRD42017053838; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=53838.

SUBMITTER: Moore G

PROVIDER: S-EPMC7434099 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review.

Moore Gaye G Wilding Helen H Gray Kathleen K Castle David D

Journal of participatory medicine 20190222 1

<h4>Background</h4>When health service providers (HSP) plan to develop electronic health (eHealth) resources for health service users (HSU), the latter's involvement is essential. Typically, however, HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the eHealth context. Furthermore, it can be difficult to identify an established method to use, or determine how to work stepwise through any particular process.<h4>Obj ...[more]

PMID: 33055069

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Project description:BACKGROUND:Generative participatory design (PD) may help in developing electronic health (eHealth) interventions. PD is characterized by the involvement of all stakeholders in creative activities. This is different from the traditional user-centered design, where users are less involved. When looking at PD from a research through design perspective, it is important to summarize the reasons for choosing a certain form of generative PD to further develop its methodology. However, the scientific literature is currently unclear about which forms of PD are used to develop eHealth and which arguments are used to substantiate the decision to use a certain form of generative PD. OBJECTIVE:This study aimed to explore the reporting and substantiation of generative PD methodologies in empirical eHealth studies published in scientific journals to further develop PD methodology in the field of eHealth. METHODS:A systematic literature review following the Cochrane guidelines was conducted in several databases (EMBASE, MEDLINE Ovid, Web of Science, and CINAHL EBSCOhost). Data were extracted on the recruitment and management of stakeholders, the use of tools, and the use of outcome measures. RESULTS:Of the 3131 studies initially identified, 69 were selected for qualitative synthesis. The reporting was very variable, depending to a large extent on whether the study stated that reporting on the PD process was a major aim. The different levels of reporting and substantiation of the choices of a recruitment strategy, stakeholder management, and tools and outcome measures are presented. Only a few authors explicitly used arguments directly related to PD guiding principles such as democratic, mutual learning, tacit and latent knowledge, and collective creativity. Even though PD principles were not always explicitly discussed in the method descriptions of the studies, they were implicitly present, mostly in the descriptions of the use of PD tools. The arguments used to substantiate the choices made in stakeholder management, PD tools, and the type of outcome measures adopted point to the involvement of PD principles. CONCLUSIONS:Studies that have used a PD research methodology to develop eHealth primarily substantiate the choice of tools made and much less the use of stakeholders and outcome measures.

Project description:IntroductionEngaging service users or consumers in quality improvement or implementing a new service is important across settings and may reduce health inequities. Implementation strategies leveraging consumer engagement are neither commonly used nor robustly operationalized in implementation science. Implementers (e.g., middle managers, facilitators) want to involve consumers in implementation activities, but do not always feel confident in how to proceed. We developed a compendium of tools called Consumer Voice to guide others how to engage consumers in design/delivery of implementation strategies. Although generalizable to other settings, we developed Consumer Voice within the context of implementing suicide prevention treatments in healthcare to reach rural U.S. military veterans, as there are suicide inequities for people in rural areas.MethodsWe developed Consumer Voice using a multistep process and human-centered design methods. In between steps, a design team met to generate insights from data, and decide which prototypes to create/refine. In preliminary work, we conducted a scan of examples in healthcare of patient engagement in implementation activities and interviewed two implementation experts about preferred learning styles. In Step 1, we interviewed 26 participants with experience in community engagement, implementation, or lived experience as a rural U.S. veteran with suicidal thoughts/behavior. In Step 2, 11 implementers beta tested prototypes then share feedback in focus groups. In Step 3, we reconvened participants from prior steps to review tools and, using nominal group technique, prioritized remaining recommendations.ResultsConsumer Voice is online, modular, and nonlinear for self-guided learning tailored to beginner, intermediate, or advanced experience with consumer engagement. Tools consist of slides, audiovisual content with written text, and templates. Findings indicated there is not one "right" way to engage consumers in implementation activities, rather that implementers wanted tools showcasing core principles for consumer engagement and practical ideas.DiscussionConsumer Voice can be used by implementers to reflect and decide on how to apply consumer engagement implementation strategies to improve equitable dissemination and uptake of evidence-based practices. Most insights generated by user data were explicitly to build trust between consumers and professionals representing institutions, which may be one component to reducing healthcare inequities.

Project description:BackgroundThe increasing use of electronic health records and the Internet of Things has led to interoperability issues at different levels (structural and semantic). Standards are important not only for successfully exchanging data but also for appropriately interpreting them (semantic interoperability). Thus, to facilitate the semantic interoperability of data exchanged in health care, considerable resources have been deployed to improve the quality of shared clinical data by structuring and mapping them to the Fast Healthcare Interoperability Resources (FHIR) standard.ObjectiveThe aims of this study are 2-fold: to inventory the studies on FHIR semantic interoperability resources and terminologies and to identify and classify the approaches and contributions proposed in these studies.MethodsA systematic mapping review (SMR) was conducted using 10 electronic databases as sources of information for inventory and review studies published during 2012 to 2022 on the development and improvement of semantic interoperability using the FHIR standard.ResultsA total of 70 FHIR studies were selected and analyzed to identify FHIR resource types and terminologies from a semantic perspective. The proposed semantic approaches were classified into 6 categories, namely mapping (31/126, 24.6%), terminology services (18/126, 14.3%), resource description framework or web ontology language-based proposals (24/126, 19%), annotation proposals (18/126, 14.3%), machine learning (ML) and natural language processing (NLP) proposals (20/126, 15.9%), and ontology-based proposals (15/126, 11.9%). From 2012 to 2022, there has been continued research in 6 categories of approaches as well as in new and emerging annotations and ML and NLP proposals. This SMR also classifies the contributions of the selected studies into 5 categories: framework or architecture proposals, model proposals, technique proposals, comparison services, and tool proposals. The most frequent type of contribution is the proposal of a framework or architecture to enable semantic interoperability.ConclusionsThis SMR provides a classification of the different solutions proposed to address semantic interoperability using FHIR at different levels: collecting, extracting and annotating data, modeling electronic health record data from legacy systems, and applying transformation and mapping to FHIR models and terminologies. The use of ML and NLP for unstructured data is promising and has been applied to specific use case scenarios. In addition, terminology services are needed to accelerate their use and adoption; furthermore, techniques and tools to automate annotation and ontology comparison should help reduce human interaction.

Project description:ObjectiveAnalysis of participatory approaches to developing health interventions for migrants and how approaches embody core participatory principles of inclusivity and democracy.DesignA systematic review of original articles. Electronic searches within the databases MEDLINE, Embase, Global Health and PsychINFO (from inception-November 2020).Eligibility criteria for study selectionOriginal peer-reviewed articles reporting research to develop and implement a health intervention for migrants, incorporating participatory approaches. We defined migrants as foreign-born individuals. Only articles reporting the full research cycle (inception, design, implementation, analysis, evaluation, dissemination) were included.Data extractionWe extracted information related to who was involved in research (migrants or other non-academic stakeholders), the research stage at which they were involved (inception, design, implementation, analysis, evaluation, dissemination), the method of their involvement and how this aligned with the core principles of participatory research-categorising studies as exhibiting active or pseudo (including proxy and indirect) participation.Results1793 publications were screened, of which 28 were included in our analysis. We found substantial variation in the application of participatory approaches in designing health interventions targeting migrants: across 168 individual research stages analysed across the 28 studies, we recorded 46 instances of active participation of migrants, 30 instances of proxy participation and 24 instances of indirect participation. All studies involved non-academic stakeholders in at least one stage of the research, only two studies exhibited evidence of active participation of migrants across all research stages. Evidence is limited due to the variability of terms and approaches used.ConclusionsImportant shortfalls in the meaningful inclusion of migrants in developing health interventions exist, suggesting a more rigorous and standardised approach is warranted to better define and deliver participatory research and improve quality.RegistrationThis review followed Preferred Reporting Items for Systematic Review and Meta-Analysis guidelines and is registered on the Open Science Framework (osf.io/2bnz5).

Dataset Information

Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review.

Publications

Participatory Methods to Engage Health Service Users in the Development of Electronic Health Resources: Systematic Review.

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