Lost in reviews: Looking for the involvement of stakeholders, patients, public and other non‐researcher contributors in realist reviews

Abrams, Ruth; Park, Sophie; Wong, Geoff; Rastogi, Juhi; Boylan, Anne‐Marie; Tierney, Stephanie; Petrova, Mila; Dawson, Shoba; Roberts, Nia

doi:10.1002/jrsm.1459

Cited by 28 publications

(38 citation statements)

References 49 publications

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“…Another key distinctive feature of the RS approach is that further to engagements with the literature, researchers also engage with key stakeholders, for example, in formulating initial theories and developing policy recommendations. 32 However, there is no clear guidance on involvement of stakeholders in realist syntheses 34 with the RAMESES (Realist And MEta-narrative Evidence Syntheses: Evolving Standards) standards for realist syntheses being intentionally flexible and just referring to achievement of end-user relevance. 35 As a result, there is a wide variation in the degrees to which stakeholder engagements are approached in RSs, which include informal consultations in formulating initial theories and developing policy recommendations 32 and formal data collection and analysis, for example, using in-depth interviews and surveys, to inform theory refinement 36 and even theory testing.…”

Section: Open Accessmentioning

confidence: 99%

Protocol for a realist synthesis of health systems responsiveness in low-income and middle-income countries

et al. 2021

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IntroductionHealth systems responsiveness is a key objective of any health system, yet it is the least studied of all objectives particularly in low-income and middle-income countries. Research on health systems responsiveness highlights its multiple elements, for example, dignity and confidentiality. Little is known, however, about underlying theories of health systems responsiveness, and the mechanisms through which responsiveness works. This realist synthesis contributes to bridging these two knowledge gaps.Methods and analysisIn this realist synthesis, we will use a four-step process, comprising: mapping of theoretical bases, formulation of programme theories, theory refinement and testing of programme theories using literature and empirical data from Ghana and Vietnam. We will include theoretical and conceptual pieces, reviews, empirical studies and grey literature, alongside the primary data. We will explore responsiveness as entailing external and internal interactions within health systems. The search strategy will be purposive and iterative, with continuous screening and refinement of theories. Data extraction will be combined with quality appraisal, using appropriate tools. Each fragment of evidence will be appraised as it is being extracted, for its relevance to the emerging programme theories and methodological rigour. The extracted data pertaining to contexts, mechanisms and outcomes will be synthesised to identify patterns and contradictions. Results will be reported using narrative explanations, following established guidance on realist syntheses.Ethics and disseminationEthics approvals for the wider RESPONSE (Improving health systems responsiveness to neglected health needs of vulnerable groups in Ghana and Vietnam) study, of which this review is one part, were obtained from the ethics committees of the following institutions: London School of Hygiene and Tropical Medicine (ref: 22981), University of Leeds, School of Medicine (ref: MREC19-051), Ghana Health Service (ref: GHS-ERC 012/03/20) and Hanoi University of Public Health (ref: 020-149/DD-YTCC).We will disseminate results through academic papers, conference presentations and stakeholder workshops in Ghana and Vietnam.PROSPERO registration numberCRD42020200353. Full record: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020200353.

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Section: Open Accessmentioning

confidence: 99%

Protocol for a realist synthesis of health systems responsiveness in low-income and middle-income countries

et al. 2021

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“…Synthesis research (systematic and scoping reviews) frequently informs policy, guidelines, and point-of-care tools as well as first-line consultation tools used by practitioners. The prevalence and impact of PPI in systematic reviews have been the subject of many studies [16][17][18][19][20][21][22][23][24][25]. Evidence synthesis bodies have taken up the call to enhance use and reporting of PPI in reviews-Cochrane launched the ACTIVE project to encourage reviewers to meaningfully engage patients and the public in creating reviews [10,26], whereas in environmental research, the Stakeholder Engagement in Evidence Synthesis website hosts a plethora of resources on involving the public in reviews [27].…”

Section: Introductionmentioning

confidence: 99%

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Ellis¹,

Kitchin²,

Vis-Dunbar³

2021

J Particip Med

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Background Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews. Objective This study seeks to identify published systematic and scoping reviews coauthored by patient or public partners and examine the characteristics of these coauthored reviews, such as which journals publish them, geographic location of research teams, and terms used to describe patient or public partner authors in affiliations, abstracts, or article text. Methods We searched CAB Direct, CINAHL, Cochrane Database of Systematic Reviews (Ovid), Embase (Ovid), MEDLINE (Ovid), and PsycInfo from 2011 to May 2019, with a supplementary search of several PPI-focused databases. We refined the Ovid MEDLINE search by examining frequently used words and phrases in relevant search results and searched Ovid MEDLINE using the modified search strategy in June 2020. Results We screened 13,998 results and found 37 studies that met our inclusion criteria. In line with other PPI research, we found that a wide range of terms were used for patient and public authors in author affiliations. In some cases, partners were easy to identify with titles such as patient, caregiver or consumer representative, patient partner, expert by experience, citizen researcher, or public contributor. In 11% (n=4) of studies, they were identified as members of a panel or advisory council. In 27% (n=10) of articles, it was either impossible or difficult to tell whether an author was a partner solely from the affiliation, and confirmation was found elsewhere in the article. We also investigated where in the reviews the partner coauthors’ roles were described, and when possible, what their specific roles were. Often, there was little or no information about which review tasks the partner coauthors contributed to. Furthermore, only 14% (5/37) of reviews mentioned patient or public involvement as authors in the abstract; involvement was often only indicated in the author affiliation field or in the review text (most often in the methods or contributions section). Conclusions Our findings add to the evidence that searching for coproduced research is difficult because of the diversity of terms used to describe patient and public partners, and the lack of consistent, detailed reporting about PPI. For better discoverability, we recommend ensuring that patient and public authorships are indicated in commonly searched database fields. When patient and public-authored research is easier to find, its impact will be easier to measure.

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Section: Methods and Analysismentioning

confidence: 99%

“…Realist review is a theory-guided approach to understanding complexities of an intervention and generating causal explanations about what works, for whom, in what circumstances and why. 63 This methodology allows for an exploration of complexity with a focus on theory generation 64 often expressed as statements of context, mechanism and outcomes. 65 Drawing on the principles of DOI and DIS theories, this review will generate evidence-based theory in the form of CMO configurations, on what is it about the implementation of ehealth initiatives used in CDM that works, for whom, in what circumstances and why?…”

Section: Methods and Analysismentioning

confidence: 99%

Understanding factors critical to the implementation of ehealth in chronic disease management: a realist review protocol

et al. 2021

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IntroductionCanadians are living longer, many with multiple chronic conditions. This population of older, frail Canadians continues to grow in size as do concurrent demands for community-based, outpatient and ambulatory models of care. Ideally, a multifaceted, proactive, planned and integrated care model includes ehealth. Although several factors are known to facilitate the implementation of ehealth in chronic disease management (CDM), for example, adequate support, usability, alignment of programme objectives, there is a growing body of inconclusive evidence on what is critical for implementation. We aim to achieve a fulsome understanding of factors critical to implementation by conducting a realist review—an approach suitable for understanding complex interventions. Our proposed review will identify factors critical to the implementation of ehealth in CDM (heart failure, chronic obstructive pulmonary disease, chronic kidney disease and/or diabetes (type 1 or 2)) without limitations to care setting, language, publication year or geography. Findings will be presented in configurations of contexts, mechanisms and outcomes (CMOs).Methods and analysisA search strategy will be iteratively developed based on the concepts of ‘implementation’ and ‘adoption’ of ‘ehealth’ interventions used within ‘CDM’ to identify the peer-reviewed and grey literature published before 31 March 2021 from five databases (Medline, Embase, Cochrane, CINAHL and PsychInfo) on ehealth interventions actively involving a healthcare provider for CDM among adults. Data extraction and synthesis will be guided by Realist and Meta-review Evidence Synthesis: Evolving Standards (RAMESES) guidelines informing core concepts of CMOs, and a study output will include a middle-range-theory describing the implementation of ehealth in CDM.Ethics and disseminationFindings will be published in an open-access peer-reviewed journal and presented at relevant conferences. A multistakeholder (patients, caregivers, healthcare providers and practitioners, decision-makers and policy-makers) perspective will be used in our dissemination approach. No formal ethics approval is required for this review.PROSPERO registration numberCRD42020208275.

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Lost in reviews: Looking for the involvement of stakeholders, patients, public and other non‐researcher contributors in realist reviews

Cited by 28 publications

References 49 publications

Protocol for a realist synthesis of health systems responsiveness in low-income and middle-income countries

Protocol for a realist synthesis of health systems responsiveness in low-income and middle-income countries

Identification and Reporting of Patient and Public Partner Authorship on Knowledge Syntheses: Rapid Review

Understanding factors critical to the implementation of ehealth in chronic disease management: a realist review protocol

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