Dataset Information

Patient and service user engagement in research: a systematic review and synthesized framework.

ABSTRACT:

Background

There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.

Objective

This paper utilizes a systematic review and environmental scan to derive an evidence-based framework for PSUE.

Design

A metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).

Eligible sources

English-language studies, commentaries, grey literature and other sources (including systematic and non-systematic reviews) pertaining to patient and public involvement in biomedical and health services research.

Data extracted

Study description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE-related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.

Results

Overall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two-part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re-assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.

Discussion and conclusions

Efforts at developing a solid evidence base on PSUE are limited by the non-standard and non-empirical nature of much of the literature. Our proposed two-part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.

SUBMITTER: Shippee ND

PROVIDER: S-EPMC5060820 | biostudies-literature | 2015 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient and service user engagement in research: a systematic review and synthesized framework.

Shippee Nathan D ND Domecq Garces Juan Pablo JP Prutsky Lopez Gabriela J GJ Wang Zhen Z Elraiyah Tarig A TA Nabhan Mohammed M Brito Juan P JP Boehmer Kasey K Hasan Rim R Firwana Belal B Erwin Patricia J PJ Montori Victor M VM Murad M Hassan MH

Health expectations : an international journal of public participation in health care and health policy 20130603 5

<h4>Background</h4>There is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.<h4>Objective</h4>This paper utilizes a systematic review and environmental scan to derive an evidence-based framework for PSUE.<h4>Design</h4>A metanarrative systematic review and environmental s ...[more]

PMID: 23731468

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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.

Project description:BackgroundService user and stakeholder engagement have been widely considered as key aspects in translating knowledge into realistic policies and practices. However, there is a paucity of accumulative evidence about service user and stakeholder engagements in maternal and newborn health (MNH) research in low- and middle-income countries (LMICs). Therefore, we aim to systematically review the existing literature that includes service user and stakeholder engagement in maternal and newborn health research in low- and middle-income countries.Materials and methodsThe design of this protocol is guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA-P) checklist. We will systematically run the search in PubMed/MEDLINE, PsycINFO, Scopus, Science Direct, and CINAHL to obtain relevant peer-reviewed literature published between January 1990 and March 2023. The list of extracted references will be screened by applying the study inclusion criteria, and eligible studies will be processed for further evaluation before being included in the review. The quality of the selected study will be assessed using the critical appraisal skills program (CASP) checklists and the Mixed Method Appraisal Tool (MMAT) checklist. A narrative synthesis will be used to synthesised results from all the included studies.Discussion and conclusionTo the best of our knowledge, this systematic review will be the first synthesised evidence on service user and stakeholder engagement in maternal and newborn health research in low- and middle-income countries. The study highlights the importance of service user and stakeholder roles in designing, implementing, and evaluating maternal and newborn health interventions in resource-poor settings. The evidence from this review is expected to be useful for national and international researchers/stakeholders for practising meaningful and effective ways of engaging users and stakeholders in maternal and newborn health research and related activities. The PROSPERO registration number is CRD42022314613.

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Dataset Information

Patient and service user engagement in research: a systematic review and synthesized framework.

Background

Objective

Design

Eligible sources

Data extracted

Results

Discussion and conclusions

Publications

Patient and service user engagement in research: a systematic review and synthesized framework.

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