BACKGROUND: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.
OBJECTIVE: This review aims to synthesize the evidence on public involvement and engagement in big data research.
METHODS: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review.
RESULTS: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research.
CONCLUSIONS: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research.
UNASSIGNED: RR2-https://doi.org/10.1136/bmjopen-2021-050167.

BACKGROUND: Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place.
OBJECTIVE: This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area.
METHODS: A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed.
RESULTS: The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact.
CONCLUSIONS: Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.

BACKGROUND: As coproduction in public services increases, understanding the role of leadership in this context is essential to the tasks of establishing relational partnerships and addressing power differentials among groups. The aims of this review are to explore models of coproduction leadership and the processes involved in leading coproduction as well as, based on that exploration, to develop a guiding framework for coproduction practices.
METHODS: A systematic review that synthesizes the evidence reported by 73 papers related to coproduction of health and welfare.
RESULTS: Despite the fact that models of coleadership and collective leadership exhibit a better fit with the relational character of coproduction, the majority of the articles included in this review employed a leader-centric underlying theory. The practice of coproduction leadership is a complex activity pertaining to interactions among people, encompassing nine essential practices: initiating, power-sharing, training, supporting, establishing trust, communicating, networking, orchestration, and implementation.
CONCLUSIONS: This paper proposes a novel framework for coproduction leadership practices based on a systematic review of the literature and a set of reflective questions. This framework aims to help coproduction leaders and participants understand the complexity, diversity, and flexibility of coproduction leadership and to challenge and enhance their capacity to collaborate effectively.

BACKGROUND: Shared decision-making facilitates collaboration between patients and health care providers for informed health decisions. Our review identified interventions to support Indigenous Peoples making health decisions. The objectives were to synthesize evidence and identify factors that impact the use of shared decision making interventions.
METHODS: An Inuit and non-Inuit team of service providers and academic researchers used an integrated knowledge translation approach with framework synthesis to coproduce a systematic review. We developed a conceptual framework to organize and describe the shared decision making processes and guide identification of studies that describe interventions to support Indigenous Peoples making health decisions. We conducted a comprehensive search of electronic databases from September 2012 to March 2022, with a grey literature search. Two independent team members screened and quality appraised included studies for strengths and relevance of studies\' contributions to shared decision making and Indigenous self-determination. Findings were analyzed descriptively in relation to the conceptual framework and reported using guidelines to ensure transparency and completeness in reporting and for equity-oriented systematic reviews.
RESULTS: Of 5068 citations screened, nine studies reported in ten publications were eligible for inclusion. We categorized the studies into clusters identified as: those inclusive of Indigenous knowledges and governance (\"Indigenous-oriented\")(n = 6); and those based on Western academic knowledge and governance (\"Western-oriented\")(n = 3). The studies were found to be of variable quality for contributions to shared decision making and self-determination, with Indigenous-oriented studies of higher quality overall than Western-oriented studies. Four themes are reflected in an updated conceptual framework: 1) where shared decision making takes place impacts decision making opportunities, 2) little is known about the characteristics of health care providers who engage in shared decision making processes, 3) community is a partner in shared decision making, 4) the shared decision making process involves trust-building.
CONCLUSIONS: There are few studies that report on and evaluate shared decision making interventions with Indigenous Peoples. Overall, Indigenous-oriented studies sought to make health care systems more amenable to shared decision making for Indigenous Peoples, while Western-oriented studies distanced shared decision making from the health care settings. Further studies that are solutions-focused and support Indigenous self-determination are needed.

Strategies for supporting evidence-informed health policy are a recognized but understudied area of policy dissemination and implementation science. Codesign describes a set of strategies potentially well suited to address the complexity presented by policy formation and implementation. We examine the health policy literature describing the use of codesign in initiatives intended to combine diverse sources of knowledge and evidence in policymaking.
The search included PubMed, MEDLINE, PsychInfo, CINAHL, Web of Science, and Google Scholar in November 2022 and included papers published between 1996 and 2022. Terms included codesign, health, policy, and system terminology. Title and abstracts were reviewed in duplicate and included if efforts informed policy or system-level decision-making. Extracted data followed scoping review guidelines for location, evaluation method, health focus, codesign definition, description, level of health system user input, sectors involved, and reported benefits and challenges.
From 550 titles, 23 citations describing 32 policy codesign studies were included from multiple continents (Australia/New Zealand, 32%; UK/Europe, 32%; South America, 14%; Africa, 9%; USA/Canada 23%). Document type was primarily case study (77%). The area of health focus was widely distributed. Policy type was more commonly little p policy (47%), followed by big p policy (25%), and service innovations that included policy-enabled funding (25%). Models and frameworks originated from formal design (e.g., human-centered or participatory design (44%), political science (38%), or health service research (16%). Reported outcomes included community mobilization (50%), policy feasibility (41%), improved multisector alignment (31%), and introduction of novel ideas and critical thinking (47%). Studies engaging policy users in full decision-making roles self-reported higher levels of community mobilization and community needs than other types of engagement.
Policy codesign is theoretically promising and is gaining interest among diverse health sectors for addressing the complexity of policy formation and implementation. The maturity of the science is just emerging. We observed trends in the association of codesign strategies and outcomes that suggests a research agenda in this area could provide practical insights for tailoring policy codesign to respond to local contextual factors including values, needs, and resources.

Universal recommendation for antiretroviral drugs and their effectiveness has put forward the challenge of assuring a chronic and continued care approach to PLHIV (People Living with HIV), pressured by aging and multimorbidity. Integrated approaches are emerging which are more responsive to that reality. Studying those approaches, and their relation to the what of delivery arrangements and the how of implementation processes, may support future strategies to attain more effective organizational responses.
We reviewed empirical studies on either HIV, multimorbidity, or both. The studies were published between 2011 and 2020, describing integrated approaches, their design, implementation, and evaluation strategy. Quantitative, qualitative, or mixed methods were included. Electronic databases reviewed cover PubMed, SCOPUS, and Web of Science. A narrative analysis was conducted on each study, and data extraction was accomplished according to the Effective Practice and Organisation of Care taxonomy of health systems interventions.
A total of 30 studies, reporting 22 different interventions, were analysed. In general, interventions were grounded and guided by models and frameworks, and focused on specific subpopulations, or priority groups at increased risk of poorer outcomes. Interventions mixed multiple integrated components. Delivery arrangements targeted more frequently clinical integration (n = 13), and care in proximity, community or online-telephone based (n = 15). Interventions reported investments in the role of users, through self-management support (n = 16), and in coordination, through multidisciplinary teams (n = 9) and continuity of care (n = 8). Implementation strategies targeted educational and training activities (n = 12), and less often, mechanisms of iterative improvement (n = 3). At the level of organizational design and governance, interventions mobilised users and communities through representation, at boards and committees, and through consultancy, along different phases of the design process (n = 11).
The data advance important lessons and considerations to take steps forward from disease-focused care to integrated care at two critical levels: design and implementation. Multidisciplinary work, continuity of care, and meaningful engagement of users seem crucial to attain care that is comprehensive and more proximal, within or cross organizations, or sectors. Promising practices are advanced at the level of design, implementation, and evaluation, that set integration as a continued process of improvement and value professionals and users\' knowledge as assets along those phases.
PROSPERO number CRD42020194117.

BACKGROUND: Recent studies mention a need to investigate partnership roles and dynamics within patient and public involvement and engagement (PPIE) in health research, and how impact and outcomes are achieved. Many labels exist to describe involvement processes, but it is unknown whether the label has implications on partnerships and outcomes. This rapid review investigates how roles between patients, relatives and researchers in a broad variety of PPIE activities in health research are described in peer reviewed papers and explores what enables these partnerships.
METHODS: Rapid review of articles published between 2012 and February 2022 describing, evaluating, or reflecting on experiences of PPIE in health research. All research disciplines and research areas were eligible. Four databases (Medline, Embase, PsychInfo and CINAHL) were searched between November 2021 and February 2022. We followed PRISMA guidelines and extracted descriptive factors: year, origin, research area and discipline, study focus, framework used and co-authorship. On a selection of articles, we performed a narrative analysis of partnership roles using Smits et al.\'s. Involvement Matrix. Lastly, we performed a meta synthesis of reported enablers and outcomes of the partnerships. Patients and Relatives (PRs) have been involved in the whole rapid review process and are co-authors of this article.
RESULTS: Seventy articles from various research disciplines and areas were included. Forty articles were selected for a narrative analysis of the role description of PRs and researchers, and a meta synthesis of enablers and outcomes. Most articles described researchers as decision-makers throughout the research cycle. PRs most often were partners when they were included as co-authors; they were mostly partners in the design, analysis, write-up, and dissemination stages. Enablers of partnerships included: PR training, personality of PRs and communication skills, trust, remuneration and time.
CONCLUSIONS: Researchers\' decision-making roles gives them control of where and when to include PRs in their projects. Co-authorship is a way of acknowledging patients\' contributions which may lead to legitimation of their knowledge and the partnership. Authors describe common enablers, which can help future partnership formation.
This article investigates how other articles describe the roles patients, relatives and researchers have in patient and public involvement activities in health research. It also investigates which factors are supportive of creating these research partnerships. We searched four health research databases and found 70 relevant articles which somehow evaluated patient involvement activities in research. From these 70 articles we chose 40 which we closely investigated for descriptions of roles in the partnerships between researchers and patients and relatives. For this, we used a tool called the Involvement Matrix which uses five different roles: Listener (who is given information), Co-thinker (who is asked to give opinion), Advisor (who gives (un)solicited advice), Partner (who works as an equal partner) and Decision-maker (Who takes initiative and (final) decisions). We found that it is often researchers who take on the role of Decision-maker and that involvement often happens on their terms. We noticed that patients and relatives most often had the role of partner, when they were listed as co-authors of the article. This shows co-authorship as an authorization of their work during patient and public involvement activities. We found that patient and relative training, patients’ and relatives’ personality and communication skills, trust, financial reimbursement, and time were mentioned most often as enablers of good research partnerships.

BACKGROUND: Service user involvement is increasingly considered essential in mental health service development and delivery. However, the impact of this involvement on services is not well documented. We aimed to understand how user involvement shapes service commissioning, development and delivery, and if/how this leads to improved service-level outcomes.
METHODS: A systematic review of electronic databases (MEDLINE, PsycINFO, CINAHL and EMBASE databases) was undertaken in June and November 2022 for studies that incorporated patient involvement in service development, and reported service-level outcomes. Included studies were synthesised into a logic model based on inputs (method of involvement), activities (changes to service) and outputs (indicators of improvement). PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analysis) guidelines were followed when conducting this review.
RESULTS: From 10,901 records identified, nine studies were included, of which six were judged to have used co-production or co-design approaches. Included studies described service user involvement ranging from consultation to co-production. We identified a range of outputs associated with service user involvement in service planning and delivery, and reported these in the form of a logic model. These service-level outputs included improved treatment accessibility, increased referrals and greater service user satisfaction. Longer-term outcomes were rarely reported and hence it was difficult to establish whether outputs are sustained.
CONCLUSIONS: More extensive forms of involvement, namely, co-design and co-production, were associated with more positive and substantial outputs in regard to service effectiveness than more limited involvement methods. However, lived experience contributions highlighted service perception outputs may be valued more highly by service users than professionals and therefore should be considered equally important when evaluating service user involvement. Although evidence of longer term outcomes was scarce, meaningful involvement of service users in service planning and delivery appeared to improve the quality of mental health services.
UNASSIGNED: Members of a lived experience advisory panel contributed to the review findings, which were co-authored by a peer researcher. Review findings were also presented to stakeholders including service users and mental health professionals.

Use of digital technologies to support meaningful engagement of people with dementia and carers increased during the COVID-19 pandemic. The purpose of this scoping review was to determine the effectiveness of digital technologies in supporting the engagement and wellbeing of people with dementia and family carers at home and in care homes. Studies published in peer reviewed literature were identified across four databases (CINAHL, Medline, PUBMED, PsychINFO). Sixteen studies met the inclusion criteria. Findings indicate that digital technologies can potentially support the wellbeing of people with dementia and family carers, although only a few studies had measured impact on wellbeing, as many were reporting on technology at proof-of-concept stage rather than commercially ready products. Moreover, current studies lacked meaningful involvement of people with dementia, family carers, and care professionals in the design of the technology. Future research should bring together people with dementia, family carers, care professionals and designers to coproduce digital technologies with researchers and evaluate them using robust methodologies. Codesign should start early in the intervention development phase and continue until implementation. There is a need for real world applications that nurture social relationships by focusing on how digital technologies can support more personalised, adaptive forms of care. Developing the evidence base to identify what makes digital technologies effective in supporting the wellbeing of people with dementia is crucial. Future interventions should therefore consider the needs and preferences of people with dementia, their families, and professional carers, as well as the suitability and sensitivity of wellbeing outcome measures.

The discussion on the \'societal impact of university research\' has emerged within the recent decade with different utilisation from the British REF impact stories to the EU Framework Programmes\' criteria. The fundamental idea is that (university) research should contribute to addressing societal challenges, such as climate change, and not just pursue \'scientific excellence\'. Several approaches have been developed, from case studies of the \'productive interactions\' that co-create knowledge with societal stakeholders to the so-called \'altmetrics\' tracking online dissemination of research outputs. Nonetheless, these experiences do not always point in the same direction, and the notion of \'societal impact\' seems still unclearly defined. Given the growing policy pressure on universities to address societal challenges, this paper reviews the scientific literature on the so-called \'societal impact\' of university research. By querying three scientific archives (Web of Science, Scopus and ScienceDirect), 135 relevant scientific publications are selected and discussed, looking for conceptualisations, monitoring methods and success factors. The review maps a value-laden discussion arguing for longer-term, multi-dimensional perspectives on university research impacts beyond bibliometric indicators. Findings highlight a progressive shift from \'attribution\', i.e., looking for causal relationships between research and societal changes, to \'contribution\', acknowledging researchers\' efforts to engage with societal challenges.