Stakeholder involvement in systematic reviews: a protocol for a systematic review of methods, outcomes and effects

Background There is an expectation for stakeholders (including patients, the public, health professionals, and others) to be involved in research. Researchers are increasingly recognising that it is good practice to involve stakeholders in systematic reviews. There is currently a lack of evidence about (A) how to do this and (B) the effects, or impact, of such involvement. We aim to create a map of the evidence relating to stakeholder involvement in systematic reviews, and use this evidence to address the two points above. Methods We will complete a mixed-method synthesis of the evidence, first completing a scoping review to create a broad map of evidence relating to stakeholder involvement in systematic reviews, and secondly completing two contingent syntheses. We will use a stepwise approach to searching; the initial step will include comprehensive searches of electronic databases, including CENTRAL, AMED, Embase, Medline, Cinahl and other databases, supplemented with pre-defined hand-searching and contacting authors. Two reviewers will undertake each review task (i.e., screening, data extraction) using standard systematic review processes. For the scoping review, we will include any paper, regardless of publication status or study design, which investigates, reports or discusses involvement in a systematic review. Included papers will be summarised within structured tables. Criteria for judging the focus and comprehensiveness of the description of methods of involvement will be applied, informing which papers are included within the two contingent syntheses. Synthesis A will detail the methods that have been used to involve stakeholders in systematic reviews. Papers from the scoping review that are judged to provide an adequate description of methods or approaches will be included. Details of the methods of involvement will be extracted from included papers using pre-defined headings, presented in tables and described narratively. Synthesis B will include studies that explore the effect of stakeholder involvement on the quality, relevance or impact of a systematic review, as identified from the scoping review. Study quality will be appraised, data extracted and synthesised within tables. Discussion This review should help researchers select, improve and evaluate methods of involving stakeholders in systematic reviews. Review findings will contribute to Cochrane training resources

World Health Organization (WHO) antibiotic regimen against other regimens for the treatment of leprosy : a systematic review and meta-analysis

Altres ajuts: Maria Lazo-Porras is funded by the Swiss Goverment Excellence Scholarship (2018.0698).To evaluate the effectiveness and safety of the World Health Organization antibiotic regimen for the treatment of paucibacillary (PB) and multibacillary (MB) leprosy compared to other available regimens. We performed a search from 1982 to July 2018 without language restriction. We included randomized controlled trials, quasi-randomized trials, and comparative observational studies (cohorts and case-control studies) that enrolled patients of any age with PB or MB leprosy that were treated with any of the leprosy antibiotic regimens established by the WHO in 1982 and used any other antimicrobial regimen as a controller. Primary efficacy outcomes included: complete clinical cure, clinical improvement of the lesions, relapse rate, treatment failure. Data were pooled using a random effects model to estimate the treatment effects reported as relative risk (RR) with 95% confidence intervals (CI). We found 25 eligible studies, 11 evaluated patients with paucibacillary leprosy, while 13 evaluated patients with MB leprosy and 1 evaluated patients of both groups. Diverse regimen treatments and outcomes were studied. Complete cure at 6 months of multidrug therapy (MDT) in comparison to rifampin-ofloxacin-minocycline (ROM) found RR of 1.06 (95% CI 0.88-1.27) in five studies. Whereas six studies compare the same outcome at different follow up periods between 6 months and 5 years, according to the analysis ROM was not better than MDT (RR of 1.01 (95% CI 0.78-1.31)) in PB leprosy. Not better treatment than the implemented by the WHO was found. Diverse outcome and treatment regimens were studied, more statements to standardized the measurements of outcomes are needed

Meet the researchers: an alternative method of engaging patients with research in mesothelioma.

There are new ways to engage people with science and research but many patient support groups and charitable organisations still hold traditional meetings to provide updates on their activities and to report new developments in their field of interest. These meetings often feature presentations given by medical doctors or, in the case of research-focussed organisations, by research scientists.Receiving feedback from people who are confused and sometimes upset by some types of information, and the way it is presented at meetings, made us think about better ways for researchers to discuss their ideas for new research, or share the findings from completed projects, with patients and members of the public.This article describes a method of public engagement called "Meet the Researchers" that enables people to hear about current trends in research face to face with the researchers planning or conducting it. "Meet the Researchers" is designed to promote discussion and allow questions to be asked in a relaxed and informal way, in small groups, which is less daunting than asking questions in front of a conference audience. The aim is to break down the barriers between researchers and patients, and enable conversations that will lead to meaningful engagement and a better understanding of research. Additionally we aim to improve understanding of how results are passed on to doctors and nurses and translated into improvements in patient care.The method was tested with patients and was rated very highly by them in the feedback they gave. Abstract:Background Innovative approaches to engaging people with science exist but are often framed around interactive events or social media technologies. Notwithstanding the availability of novel approaches, many patient support groups and charitable organisations continue to hold traditional meetings and seminars to provide information and updates on their activities, and report on developments in their field of interest. In the case of research-focussed organisations, these meetings often take the form of presentations delivered by clinical experts or research scientists.Observation of mesothelioma patients, their relatives, friends and carers attending scientific or clinical-themed meetings has shown that they can be confused, and sometimes distressed, by presentations. This can be due to didactic presentations that are not properly targeted to this audience and a lack of a general overview or summary at the end of meetings that would provide some simple take home messages. This experience motivated the development of a less formal method of sharing complex information and ideas in a simplified manner. "Meet the Researchers" aims to make researchers accessible to patients in order to raise awareness and understanding of research and to explain how research translates into, and informs practice. This approach encourages the use of plain English, removes the tendency to rely on PowerPoint slides to convey the message and moreover, provides an opportunity for researchers to hear patients' views. Methods Small groups of participants met face to face with the researchers planning or conducting research into their condition, and discussed the topics in a relaxed and informal way. The researchers spent a minimum of 20-min with each group before moving on to the next. Info-graphics on a portable device or printed hand-outs in plain English were allowed but no formal presentations were made. Results Our method has been evaluated using feedback data from three annual events held from 2016 to 2018: 100% of participants indicated that they liked the format "very much"(76.0%) or "quite a lot"(24.0%); 80.4% found the topics "very interesting" and 75.9% found it "very easy" to ask questions. Free text comments revealed themes of 'hope' and 'altruism'. Researchers also reported benefits from participation such as learning about patient' priorities and networking. Conclusion "Meet the Researchers" provides a unique opportunity for mesothelioma researchers and patients, relatives and carers to interact on a more equal footing. It stimulates discussion, promotes understanding and provides a more informal setting for non-professional participants to ask questions. It is a format that could easily be adapted for use in other conditions

Power to the people: To what extent has public involvement in applied health research achieved this?

Public involvement in applied health research is a pre-requisite for funding from many funding bodies. In particular the National Institute of Health Research (NIHR) in the UK, clearly states that it values lay knowledge and there is an expectation that members of the public will participate as research partners in research. As a result a large public involvement infrastructure has emerged to facilitate this. However, there is concern that despite the flurry of activity in promoting public involvement, lay knowledge is marginalised and has limited impact on research decision-making. This article asks to what extent has power shifted from the scientific research community to the public? It discusses the meaning of power and models of public involvement and examines the development of public involvement in applied health research. It identifies public involvement in a range of decision-making: identifying priority areas for commissioning research; making decisions about which projects are funded; decisions about details of research design. Whilst there is evidence that the public voice is present in the composition of research proposals submitted to NIHR and in the decision-making about which projects are funded and how they are carried out, there is less evidence of a change in the power dynamic manifest in social relations between the scientific research community and the public. As a result the biomedical model remains dominant and largely unchallenged in research decision-making

Patient and public involvement in designing and conducting doctoral research: the whys and the hows

YesPublic and patient involvement (PPI) has been shown to have a positive impact on health and social care research. However, adequate examples describing how to operationalise effective PPI, especially in doctoral studies, are lacking. Hence, doctoral researchers new to research, or those with limited experience, can be discouraged from facilitating PPI in their research. This paper aims to describe and discuss in detail the approaches used by four doctoral researchers to incorporate PPI at different stages of their research studies from study design to disseminating findings. We aim to inform other doctoral researchers about the challenges and limitations relating to PPI that we faced. Through these, we share pragmatic recommendations for facilitating PPI during doctoral studies. The description of four case studies demonstrated that PPI could be incorporated at various stages during doctoral research. This has had a beneficial impact on our research study progression, researcher self-esteem and lastly, helped alleviate researcher isolation during doctoral studies.Supported by Research Design Service Yorkshire and the Humber (RDSYH), the National Institute for Health Research (NIHR) Yorkshire and Humber Patient Safety Translational Research Centre (NIHR Yorkshire and Humber PSTRC). This paper presents independent research funded by NIHR under its Research for Patient Benefit (RfPB) Programme (Grant Reference Number PB-PG-0317-20010).Research Development Fund Publication Prize Award winner, July 2019

Social Enterprise Evaluation : Implications for Tourism Development

The evaluation of social enterprise projects has focused mainly on devising effective performance measurement methods and processes to justify the investment of resources and time committed to such activities. With increasing demands for accountability, effectiveness, evidence of return on investment and value-added results, evaluation activities have been driven by imperatives of objectivity in assessments and the development of tools that monetize the social outcomes and impacts of social enterprise projects. These traditional approaches to evaluation have also been widely adapted in tourism based social enterprises that seek to attain goals of poverty alleviation, empowerment of local communities, and improved livelihoods for those marginalized from mainstream tourism economic activities. This chapter argues that traditional approaches to evaluation may be limited in supporting social entrepreneurship projects with development objectives of empowerment and societal change. It is proposed that social enterprise projects involving community participation may be better positioned to achieve their developmental objectives by incorporating more of the principles of Participatory Evaluation (PE) and Empowerment Evaluation (EE) in the quest to harness the economic prowess of tourism for human development

Stakeholder involvement in systematic reviews:a scoping review

Abstract Background There is increasing recognition that it is good practice to involve stakeholders (meaning patients, the public, health professionals and others) in systematic reviews, but limited evidence about how best to do this. We aimed to document the evidence-base relating to stakeholder involvement in systematic reviews and to use this evidence to describe how stakeholders have been involved in systematic reviews. Methods We carried out a scoping review, following a published protocol. We searched multiple electronic databases (2010–2016), using a stepwise searching approach, supplemented with hand searching. Two authors independently screened and discussed the first 500 abstracts and, after clarifying selection criteria, screened a further 500. Agreement on screening decisions was 97%, so screening was done by one reviewer only. Pre-planned data extraction was completed, and the comprehensiveness of the description of methods of involvement judged. Additional data extraction was completed for papers judged to have most comprehensive descriptions. Three stakeholder representatives were co-authors for this systematic review. Results We included 291 papers in which stakeholders were involved in a systematic review. Thirty percent involved patients and/or carers. Thirty-two percent were from the USA, 26% from the UK and 10% from Canada. Ten percent (32 reviews) were judged to provide a comprehensive description of methods of involving stakeholders. Sixty-nine percent (22/32) personally invited people to be involved; 22% (7/32) advertised opportunities to the general population. Eighty-one percent (26/32) had between 1 and 20 face-to-face meetings, with 83% of these holding ≤ 4 meetings. Meetings lasted 1 h to ½ day. Nineteen percent (6/32) used a Delphi method, most often involving three electronic rounds. Details of ethical approval were reported by 10/32. Expenses were reported to be paid to people involved in 8/32 systematic reviews. Discussion/conclusion We identified a relatively large number (291) of papers reporting stakeholder involvement in systematic reviews, but the quality of reporting was generally very poor. Information from a subset of papers judged to provide the best descriptions of stakeholder involvement in systematic reviews provide examples of different ways in which stakeholders have been involved in systematic reviews. These examples arguably currently provide the best available information to inform and guide decisions around the planning of stakeholder involvement within future systematic reviews. This evidence has been used to develop online learning resources. Systematic review registration The protocol for this systematic review was published on 21 April 2017. Publication reference: Pollock A, Campbell P, Struthers C, Synnot A, Nunn J, Hill S, Goodare H, Watts C, Morley R: Stakeholder involvement in systematic reviews: a protocol for a systematic review of methods, outcomes and effects. Research Involvement and Engagement 2017, 3:9. https://doi.org/10.1186/s40900-017-0060-4

Initiation and continuation of randomized trials after the publication of a trial stopped early for benefit asking the same study question: STOPIT-3 study design

Abstract Background: Randomized control trials (RCTs) stopped early for benefit (truncated RCTs) are increasingly common and, on average, overestimate the relative magnitude of benefit by approximately 30%. Investigators stop trials early when they consider it is no longer ethical to enroll patients in a control group. The goal of this systematic review is to determine how investigators of ongoing or planned RCTs respond to the publication of a truncated RCT addressing a similar question. Methods/design: We will conduct systematic reviews to update the searches of 210 truncated RCTs to identify similar trials ongoing at the time of publication, or started subsequently, to the truncated trials ('subsequent RCTs'). Reviewers will determine in duplicate the similarity between the truncated and subsequent trials. We will analyze the epidemiology, distribution, and predictors of subsequent RCTs. We will also contact authors of subsequent trials to determine reasons for beginning, continuing, or prematurely discontinuing their own trials, and the extent to which they rely on the estimates from truncated trials. Discussion: To the extent that investigators begin or continue subsequent trials they implicitly disagree with the decision to stop the truncated RCT because of an ethical mandate to administer the experimental treatment. The results of this study will help guide future decisions about when to stop RCTs early for benefit