Objectives Involvement of patients, health professionals, and the wider public (‘stakeholders’) is seen to be beneficial to the quality, relevance and impact of research and may enhance the usefulness and uptake of systematic reviews. However, there is a lack of evidence and resources to guide researchers in how to actively involve stakeholders in systematic reviews. In this paper, we report the development of the ACTIVE framework to describe how stakeholders are involved in systematic reviews. Methods We developed a framework using methods previously described in the development of conceptual frameworks relating to other areas of public involvement, including: literature searching, data extraction, analysis, and categorization. A draft ACTIVE framework was developed and then refined after presentation at a conference workshop, before being applied to a subset of 32 systematic reviews. Data extracted from these systematic reviews, identified in a systematic scoping review, were categorized against pre-defined constructs, including: who was involved, how stakeholders were recruited, the mode of involvement, at what stage there was involvement and the level of control or influence. Results The final ACTIVE framework described whether patients, carers and/or families, and/or other stakeholders (including health professionals, health decision makers and funders) were involved. We defined: recruitment as either open or closed; the approach to involvement as either one-time, continuous or combined; and the method of involvement as either direct or indirect. The stage of involvement in reviews was defined using the Cochrane Ecosystem stages of a review. The level of control or influence was defined according to the roles and activities of stakeholders in the review process, and described as the ACTIVE continuum of involvement. Conclusions The ACTIVE framework provides a structure with which to describe key components of stakeholder involvement within a systematic review, and we have used this to summarize how stakeholders have been involved in a subset of varied systematic reviews. The ACTIVE continuum of involvement provides a new model that uses tasks and roles to detail the level of stakeholder involvement. This work has contributed to the development of learning resources aimed at supporting systematic review authors and editors to involve stakeholders in their systematic reviews. The ACTIVE framework may support the decision-making of systematic review authors in planning how to involve stakeholders in future reviews.

Public involvement in research occurs when the public, patients, or research participants are actively contributing to the research process. Public involvement has been acknowledged as a key priority for prominent human genomics research initiatives in many different countries. However, to date, there has been no detailed analysis or review of the features, methods, and impacts of public involvement occurring in human genomics research projects worldwide. Here, we review the reported public involvement in 96 human genomics projects (initiatives), based on a database of initiatives hosted by the Global Alliance for Genomics and Health, according to information reported on public domain websites. To conduct the scoping review, we applied a structured categorization of criteria to all information extracted from the search. We found that only a third of all initiatives reported public involvement in any capacity (32/96, 33%). In those reporting public involvement, we found considerable variation in both the methods and tasks of involvement. Some noteworthy initiatives reported diverse and comprehensive ways of involving the public, occurring through different stages of the research project cycle. Three notable initiatives reported a total of eight distinct impacts as a result of involving people. Our findings suggest there would be intrinsic value in having more public involvement occur in human genomics research worldwide. We also suggest that more systematic ways of reporting and evaluating involvement would be highly beneficial, to help develop best practices.

BackgroundThere 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.MethodsWe 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.ResultsWe 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/conclusionWe 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 registrationThe 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.Electronic supplement...

ObjectiveTo identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy).SettingInternational.ParticipantsWe included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both).DesignSurvey.MethodsWe invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes.ResultsParticipants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals.ConclusionsConsumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals’ communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

Ensuring people affected by initiatives (including research, education and international development) are involved in shaping how they are done is essential to ensure that what is being done (including what is being researched) is aligned with the priorities of those affected. This includes ensuring that access to knowledge generated from the initiative is universal (open access), according to the UN Convention of Human Rights. Meanwhile, ‘citizen science’ and participatory action research are blurring the lines between concepts such as ‘researcher’, ‘public’, ‘patient’ and ‘citizen’. For example, those researching global air pollution are not limited to distinct disciplines such as ‘public health’, ‘environment’ or ‘education’, with everyone affected, including researchers. The importance of involving people in initiatives by sharing power is clear, but evidence-informed methods of doing this are lacking.Creating an evidence base to inform the most effective ways of sharing power when designing, doing and evaluating initiatives is essential in order to ensure efficient, effective and equitable ways of working for the benefit of all.Standardised Data on Initiatives (STARDIT) is designed to create a standard way to share information about who was involved in an initiative (who did which tasks), what was done, what was learned and any impacts which occurred. It is designed to be flexible, so it can be easily adapted to be useful across all disciplines, including health, environment, basic science, policy and international development. STARDIT reports will be shared open access (in the public domain), using machine readable linked-data.STARDIT is being co-created in a collaborative way, with anyone in the world invited to be a part of shaping the development. All information about it will be shared for free under a Creative Commons licence. The project is currently being hosted by the WikiJournals on Wikimedia Foundation servers. The co-creation process is being supported pro-bono by the charity ‘Science for All’.