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Patient and Public Involvement (PPI) involves working in collaboration or partnership with patients, carers, families, service users, or the public, in planning, designing, managing, conducting, disseminating, and translating research. PPI in health and clinical research has increased exponentially over the last two decades. Despite this, it is not regulated, nor are there any universally agreed standards or ethics applied to PPI in research. However, health and clinical research is a heavily regulated area and is subject to a great deal of international and national legislation, policy, procedure, and guidance. Included in this is legislation and policy relating to the safe participation of those who are the subjects of research i.e. patients, carers, families, members of the public. They are also protected from harm by research governance and research ethics processes. Academic institutions, health and care systems, and research funders, across Europe and the US encourage and mandate PPI in research, and there is a significant need to educate researchers and prospective researchers across health and care in ethical, effective, and impactful PPI. Many health and care educators offer training modules or courses on how to engage and involve patients and others in the research process. That training may also include patients as educators. This places an onus on academic institutions responsible for training health professionals, and managers to provide research training and build capacity in PPI. This handbook adds to the growing literature relating to PPI in research and provides a reference point and guidance on ethical research involving PPI. It makes an important contribution to the debate about the ethical aspects of involving patients and the public as partners in the design, conduct, and dissemination of research.

The epidemiological transition phenomena drive the attention to focus the scope on health literacy as it has an impact on patients' health outcomes and quality of life. This paper aims to explore the implemented interventions for improving users' ability to identify trustworthy online health information. A comprehensive search of the literature will be conducted on the following electronic bibliographic databases: Ovid Medline, Embase, Cochrane database, Academic search complete and APA psycinfo. Further, manual search of eligible studies reference lists will be carried out to identify other eligible studies. The search strategy will include a combination of three key blocks of terms, namely: (adult OR adults) Or (patient OR patients) OR (layperson OR laypersons) OR (caregiver OR caregivers), (Intervention OR Interventions) OR Educational programs OR (health literacy And curriculum) OR Community outreach OR Interactive workshops OR (Online portal OR Patient Portals), and information seeking behavior OR consumer health information OR online information OR social media OR access to information. The results of these categories will then be combined using the AND connector. Two independent reviewers will screen and assess data quality. Disagreements will be resolved by consensus. Due to the anticipated methodological pluralism of the potentially eligible studies, a narrative synthesis of the findings on interventions aimed at improving users' ability to identify trustworthy online information will be provided according to the pre-identified thematic areas. Furthermore, a narrative synthesis of the reported barriers and facilitators for applying these interventions by end users. Given that the focus of our review findings is on understanding the breadth and depth of the global research into interventions to improve users' ability to identify trustworthy online health information. The findings will be of great value to inform future innovative approaches to promote identification of trustable online sources for young people worldwide.

Background Community-Based Participatory Research (CBPR) is an approach in which researchers and community stakeholders form equitable partnerships to tackle issues related to community health improvement and knowledge production. Our 2012 realist review of CBPR outcomes reported long-term effects that were touched upon but not fully explained in the retained literature. To further explore such effects, interviews were conducted with academic and community partners of partnerships retained in the review. Realist methodology was used to increase the understanding of what supports partnership synergy in successful long-term CBPR partnerships, and to further document how equitable partnerships can result in numerous benefits including the sustainability of relationships, research and solutions. Methods Building on our previous realist review of CBPR, we contacted the authors of longitudinal studies of academic-community partnerships retained in the review. Twenty-four participants (community members and researchers) from 11 partnerships were interviewed. Realist logic of analysis was used, involving middle-range theory, context-mechanism-outcome configuration (CMOcs) and the concept of the ‘ripple effect’. Results The analysis supports the central importance of developing and strengthening partnership synergy through trust. The ripple effect concept in conjunction with CMOcs showed that a sense of trust amongst CBPR members was a prominent mechanism leading to partnership sustainability. This in turn resulted in population-level outcomes including: (a) sustaining collaborative efforts toward health improvement; (b) generating spin-off projects; and (c) achieving systemic transformations. Conclusion These results add to other studies on improving the science of CBPR in partnerships with a high level of power-sharing and co-governance. Our results suggest sustaining CBPR and achieving unanticipated benefits likely depend on trust-related mechanisms and a continuing commitment to power-sharing. These findings have implications for building successful CBPR partnerships to address challenging public health problems and the complex assessment of outcomes.

ObjectivesThe objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias.DesignA scoping review.SettingThis scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria.Primary and secondary outcome measuresExplore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias.ResultsThe final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias.ConclusionWe conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

Participatory health research (PHR) as a research paradigm, guides the research process and strives to achieve positive change in society in the interest of people's health. In this scoping review, PHR will be used as an umbrella term considering a wide range of collaborative research approaches in the health context. PHR is conducted 'with' or 'by' those it intends to benefit, as opposed to 'on' and 'for' them. Their involvement throughout the research process seeks to shift power and decision-making from where they traditionally lay within academia toward community, patient and public end-users. Research cannot be truly participatory without concurrently addressing power dynamics within the partnership and power imbalances in decision making. Therefore, power sharing can be defined as a major factor in building effective academic-community collaborations. This scoping review aims to identify, clarify, and map existing literature on power and power sharing in PHR from both theoretical and practical perspectives. Specifically, we will explore how power is conceptualised throughout the literature, and how power and power sharing are applied and addressed in real-life PHR partnerships. This scoping review will be conducted in accordance with the guidelines outlined in the Joanna Briggs Institute (JBI) Reviewer's Manual. This scoping review will consider both empirical and non-empirical research that report on understanding power and power sharing in participatory health research partnerships. All appropriate studies will be retrieved from the following five electronic databases: PubMed, Scopus, Embase, PsycINFO, SocIndex. This review will be limited to articles published in English and from January 1998 to March 2024. As the scoping review aims to capture more than peer-reviewed and published literature, it will also include grey literature such as theses and dissertations, reports, conference proceedings, and editorials. Data from the included literature will be extracted based on the data extraction tool, defined in advance. As primary data will not be collected, ethical approval is not required to conduct the scoping review. The findings of this study will be disseminated through peer-reviewed publications.

Introduction Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community‐based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. Study Aim The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Setting and Participants Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Analysis Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Results Participants described the evolution of trust as a function of three contextual factors: (1) the set‐up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set‐up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Discussion Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. Patient or Public Contribution A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co‐author of this manuscript (Zoe Hughes).

Introduction Many inconsistencies have been identified in the translation of evidence‐based treatment recommendations for musculoskeletal shoulder pain into healthcare services, with little known about factors influencing decision‐making. The objective of this study was to explore the views and experiences of healthcare providers (HCPs) and people living with shoulder pain on treatment decision‐making. Methods Adopting a qualitative design, purposeful sampling was employed to recruit 13 individuals with nonspecific musculoskeletal shoulder pain and 30 HCPs. Data were collected through 1:1 semi‐structured interviews and analysed using an approach informed by Constructivist Grounded Theory. To facilitate analysis, two patient and public involvement (PPI) meetings were conducted. Results Most participants (69%) had shoulder pain of ≥1‐year duration. Biomechanical beliefs about shoulder pain predominated and were heavily influential in decision‐making for both patients and HCPs. Despite a consensus that therapeutic alliance facilitated decision‐making, the extent of collaboration between HCPs and patients in treatment decision‐making was rather limited. In addition to condition‐specific factors, Individual patient characteristics and resources also influenced treatment decisions. Conclusion Findings revealed the complexity of the decision‐making process for both patients and HCPs, exposing substantial gaps between the reported views and experiences of participants and the principles of client‐centred and evidence‐based practice. There is a pressing need to enhance the translation of evidence‐based knowledge into practice in this clinical area. Patient or Public Contribution In line with a consultative approach to collaborative data analysis, a subgroup of participants attended two PPI meetings to provide commentary and feedback on preliminary findings.

Background Research funders in Canada and abroad have made substantial investments in supporting collaborative research approaches to generating and translating knowledge as it is believed to increase knowledge use. Canadian health research funders have advocated for the use of integrated knowledge translation (IKT) in health research, however, there is limited research around how IKT compares to other collaborative research approaches. Our objective was to better understand how IKT compares with engaged scholarship, Mode 2 research, co-production and participatory research by identifying the differences and similarities among them in order to provide conceptual clarity and reduce researcher and knowledge user confusion about these common approaches. Methods We employed a qualitative descriptive method using interview data to better understand experts’ perspectives and experiences on collaborative research approaches. Participants’ responses were analysed through thematic analysis to elicit core themes. The analysis was centred around the concept of IKT, as it is the most recent approach; IKT was then compared and contrasted with engaged scholarship, Mode 2 research, co-production and participatory research. As this was an iterative process, data triangulation and member-checking were conducted with participants to ensure accuracy of the emergent themes and analysis process. Results Differences were noted in the orientation (i.e. original purpose), historical roots (i.e. disciplinary origin) and partnership/engagement (i.e. role of partners etc.). Similarities among the approaches included (1) true partnerships rather than simple engagement, (2) focus on essential components and processes rather than labels, (3) collaborative research orientations rather than research methods, (4) core values and principles, and (5) extensive time and financial investment. Core values and principles among the approaches included co-creation, reciprocity, trust, fostering relationships, respect, co-learning, active participation, and shared decision-making in the generation and application of knowledge. All approaches require extensive time and financial investment to develop and maintain true partnerships. Conclusions This qualitative study is the first to systematically synthesise experts’ perspectives and experiences in a comparison of collaborative research approaches. This work contributes to developing a shared understanding of collaborative research approaches to facilitate conceptual clarity in use, reporting, indexing and communication among researchers, trainees, knowledge users and stakeholders to advance IKT and implementation science.

Context: Participatory research (PR) is the co-construction of research through partnerships between researchers and people affected by and/or responsible for action on the issues under study. Evaluating the benefits of PR is challenging for a number of reasons: the research topics, methods, and study designs are heterogeneous; the extent of collaborative involvement may vary over the duration of a project and from one project to the next; and partnership activities may generate a complex array of both short- and long-term outcomes. Methods: Our review team consisted of a collaboration among researchers and decision makers in public health, research funding, ethics review, and community-engaged scholarship. We identified, selected, and appraised a large-variety sample of primary studies describing PR partnerships, and in each stage, two team members independently reviewed and coded the literature. We used key realist review concepts (middle-range theory, demi-regularity, and context-mechanism-outcome configurations [CMO]) to analyze and synthesize the data, using the PR partnership as the main unit of analysis. Findings: From 7,167 abstracts and 591 full-text papers, we distilled for synthesis a final sample of twenty-three PR partnerships described in 276 publications. The link between process and outcome in these partnerships was best explained using the middle-range theory of partnership synergy, which demonstrates how PR can (1) ensure culturally and logistically appropriate research, (2) enhance recruitment capacity, (3) generate professional capacity and competence in stakeholder groups, (4) result in productive conflicts followed by useful negotiation, (5) increase the quality of outputs and outcomes over time, (6) increase the sustainability of project goals beyond funded time frames and during gaps in external funding, and (7) create system changes and new unanticipated projects and activities. Negative examples illustrated why these outcomes were not a guaranteed product of PR partnerships but were contingent on key aspects of context. Conclusions: We used a realist approach to embrace the heterogeneity and complexity of the PR literature. This theory-driven synthesis identified mechanisms by which PR may add value to the research process. Using the middle-range theory of partnership synergy, our review confirmed findings from previous PR reviews, documented and explained some negative outcomes, and generated new insights into the benefits of PR regarding conflicts and negotiation between stakeholders, program sustainability and advancement, unanticipated project activity, and the generation of systemic change.

BackgroundThe value of a participatory approach to the generation of evidence for health and social services from a moral, methodological and policy level continues to gain recognition globally. Trust is a crucial mechanism in the participatory health research (PHR) process and is strongly influenced by context. However, gaps remain in conceptualising and operationalising trust over time in PHR partnerships.ObjectiveThis case study seeks to address these gaps by exploring the evolution of trust multidimensionally across two timepoints.Setting and participantsParticipants in a PHR project called the Public and Patient Involvement (PPI) Ignite Network in Ireland (n=57 (T1); n=56 (T2)) were invited to complete a network survey at two timepoints. The PPI Ignite Network had local and national partners.Network measuresSeveral core social network measures were calculated at both timepoints to characterise the differences between trust dimensions and between local and national partners.ResultsSubtle changes were observed across most network measures over the two timepoints. While there was a slight decrease in the number of connections for each trust dimension throughout the PPI Ignite Network, connections that were consistently nominated in both timepoints increased slightly. Some trust dimensions, such as vulnerability and integrity, were more similar, while others, like integrity and shared values, visions and goals, differed greatly, where national partners consistently received more incoming connections compared with local partners.ConclusionThese findings (1) provide empirical support for using social network analysis to operationalise trust comprehensively and multidimensionally over time in a participatory partnership, (2) offer nuanced insights into the trust development process within the PPI Ignite Network and (3) enhance our understanding of trust in the community-based participatory research model.