Stakeholder involvement in systematic reviews:a scoping review

Background: There is increasing recognition that it is good practice to involve patients, health professionals, thepublic and others (stakeholders) in systematic reviews, but limited evidence about how best to do this.Objectives: 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 conducting and producingsystematic reviews.Methods: We carried out a scoping review, following a published protocol. We searched multiple electronicdatabases (2010-16). Titles and abstracts were screened by one author, after determining > 95% agreementbetween authors. We completed pre-planned data extraction and judged the comprehensiveness of thedescription of methods of involvement. We completed additional data extraction for papers judged to have themost comprehensive descriptions.Results: We included 291 papers in which stakeholders were involved in a systematic review. Patients and/orcarers were involved in 30%. Thirty-two per cent were from the USA, 26% from the UK and 10% from Canada. Wejudged 10% (32) to provide a comprehensive description of methods of involving stakeholders. Of these, 69%(22/32) personally invited people and 22% (7/32) advertised opportunities to the general population. There werebetween 1 and 20 face-to-face meetings in 81% (26/32), with 83% of these holding ≤ 4 meetings. Meetings lasted 1 Abstracts of the 25th Cochrane Colloquium, Edinburgh, UK100hour to ½ day. A Delphi method was used in 19% (6/32), most often involving three electronic rounds. Details ofethical approval were reported by 10/32. Expenses were reported to be paid in 8/32 systematic reviews.Conclusions: We identified a relatively large number of papers (291) reporting stakeholder involvement insystematic reviews, but the quality of reporting was generally very poor. Information from a subset of papersjudged to provide the best descriptions provides examples of different ways in which stakeholders have beeninvolved in systematic reviews. These examples currently provide the best available information to inform andguide decisions around the planning of stakeholder involvement in future systematic reviews. This evidence hasbeen used to develop online learning resources. Patient or healthcare consumer involvement: Three stakeholderrepresentatives were co-authors on this review

Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them : a systematic scoping review

Background: In planning high quality research in any aspect of care for children and young people with life-limiting conditions it is important to prioritise resources in the most appropriate areas. Aim: To map research priorities identified from existing research prioritisation exercises relevant to infants, children, and young people with life-limiting conditions, in order to inform future research. Design: We undertook a systematic scoping review to identify existing research prioritisation exercises; the protocol is publicly available on the project website. Data sources: The bibliographic databases ASSIA, CINAHL, MEDLINE/MEDLINE In Process and Embase were searched from 2000. Relevant reference lists and websites were hand searched. Included were any consultations aimed at identifying research for the benefit of neonates, infants, children and/or young people (birth to age 25 years) with life-limiting, -threatening or -shortening conditions; their family, parents, carers; and/or the professional staff caring for them. Results: Twenty four research prioritisation exercises met the inclusion criteria, from which 279 research questions or priority areas for health research were identified. The priorities were iteratively mapped onto an evolving framework, informed by WHO classifications. This resulted in identification of 16 topic areas, 55 sub-topics and 12 sub-sub-topics. Conclusions: There are numerous similar and overlapping research prioritisation exercises related to children and young people with life-limiting conditions. By mapping existing research priorities in the context in which they were set, we highlight areas to focus research efforts on. Further priority setting is not required at this time unless devoted to ascertaining families’ perspectives