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Background: There is evidence supporting the value of patient engagement (PE) in research to patients and researchers. However, there is little research evidence on the influence of PE throughout the entire research process as well as the outcomes of research engagement. The purpose of our study is to add to this evidence., Methods: We used a convergent mixed method design to guide the integration of our survey data and observation data to assess the influence of PE in two groups, comprising patient research partners (PRPs), clinicians, and researchers. A PRP led one group (PLG) and an academic researcher led the other (RLG). Both groups were given the same research question and tasked to design and conduct an inflammatory bowel disease (IBD)-related patient preference study. We administered validated evaluation tools at three points and observed PE in the two groups conducting the IBD study., Results: PRPs in both groups took on many operational roles and influenced all stages of the IBD-related qualitative study: launch, design, implementation, and knowledge translation. PRPs provided more clarity on the study design, target population, inclusion-exclusion criteria, data collection approach, and the results. PRPs helped operationalize the project question, develop study material and data collection instruments, collect data, and present the data in a relevant and understandable manner to the patient community. The synergy of collaborative partnership resulted in two projects that were patient-centered, meaningful, understandable, legitimate, rigorous, adaptable, feasible, ethical and transparent, timely, and sustainable., Conclusion: Collaborative and meaningful engagement of patients and researchers can influence all stages of qualitative research including design and approach, and outputs., (© 2024. The Author(s).)

Background: In the last decades, pediatric patient engagement has received growing attention and its importance is increasingly acknowledged. Pediatric patient engagement in health care can be defined as the involvement of children and adolescents in the decision-making of daily clinical care, research and intervention development. Although more attention is paid to pediatric patient engagement, a comprehensive overview of the activities that have been done regarding pediatric patient engagement and the changes over time is lacking. Therefore, the aim of this study is to provide an overview of the literature about pediatric patient engagement., Methods: The methodological framework of Arksey & O'Malley was used to conduct this scoping review. The bibliographic databases Medline, Embase, and PsycINFO were searched for eligible articles. All retrieved articles were screened by at least two researchers in two steps. Articles were included if they focused on pediatric patient engagement, were carried out in the context of clinical care in pediatrics, and were published as full text original article in English or Dutch. Data (year of publication, country in which the study was conducted, disease group of the participants, setting of pediatric patient engagement, used methods, and age of participants) were extracted, synthesized, and tabulated., Results: A total of 288 articles out of the 10,714 initial hits met the inclusion criteria. Over the years, there has been an increase in the number of studies that engage pediatric patients. Pediatric patients, especially patients with multiple conditions or oncology patients, were most involved in studies in the United States, United Kingdom, and Canada. Pediatric patients were most often asked to express their views on questions from daily clinical care and the individual interview was the most used method. In general, the extent to which pediatric patients are engaged in health care increases with age., Discussion: This scoping review shows that there is an increasing interest in pediatric patient engagement. However, lack of uniformity about the definition of pediatric patient engagement and clear information for clinicians hinders engagement. This overview can inform clinicians and researchers about the different ways in which pediatric patient engagement can be shaped and can guide them to engage pediatric patients meaningfully in their projects., (© 2023. The Author(s).)

Introduction: Effective engagement of underrepresented communities in health research and policy remains a challenge due to barriers that hinder participation. Our study had two objectives: (1) identify themes of person-centred care (PCC) from perspectives of diverse patients/caregivers that would inform the development of person-centred quality indicators (PC-QIs) for evaluating the quality of PCC and initiatives to improve PCC and (2) explore innovative participatory approaches to engage ethnocultural communities in qualitative research., Methods: Drawing on participatory action research methods, we partnered with a community-based organization to train six 'Community Brokers' from the Chinese, Filipino, South Asian, Latino-Hispanic, East African and Syrian communities, who were engaged throughout the study. We also partnered with the provincial health organization to engage their Patient and Family Advisory, who represented further aspects of diversity. We conducted focus group discussions with patients/caregivers to obtain their perspectives on their values, preferences and needs regarding PCC. We identified themes through our study and engaged provincial stakeholders to prioritize these themes for informing the development of PC-QIs and codesign initiatives for improving PCC., Results: Eight focus groups were conducted with 66 diverse participants. Ethnocultural communities highlighted themes related to access and cost of care, language barriers and culture, while the Patient and Family Advisory emphasized patient and caregiver engagement. Together with provincial stakeholders, initiatives were identified to improve PCC, such as codesigning innovative models of training and evaluation of healthcare providers., Conclusion: Incorporating patient and community voices requires addressing issues related to equity and understanding barriers to effective and meaningful engagement., Patient or Public Contribution: Patient and public engagement was central to our research study. This included partnership with a community-based organization, with a broad network of ethnocultural communities, as well as the provincial health service delivery organization, who both facilitated the ongoing engagement of diverse patients/caregiver communities throughout our study including designing the study, recruiting participants, collecting and organizing data, interpreting findings and mobilizing knowledge. Drawing from participatory action research methods, patients and the public were involved in the codesign of the PC-QIs and initiatives to improve PCC in the province based on the findings from our study., (© 2021 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Engaging patients in health care, research and policy is essential to improving patient-important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the engagement of children and adolescents in health care, the aim of this project is to develop an engagement game., Methods: A user-centred design was used to develop a patient engagement game in three steps: (1) identification of important themes for adolescents regarding their illness, treatment and hospital care, (2) evaluation of the draft version of the game and (3) testing usability in clinical practice. Adolescents (12-18 years) were engaged in all steps of the development process through focus groups, interviews or a workshop. These were audio-recorded, transcribed verbatim and analysed in MAXQDA., Results: (1) The important themes for adolescents (N = 15) were included: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers. (2) Then, based on these themes, the engagement game was developed and the draft version was evaluated by 13 adolescents. Based on their feedback, changes were made to the game (e.g., adjusting the images and changing the game rules). (3) Regarding usability, the pilot version was evaluated positively. The game helped adolescents to give their opinion. Based on the feedback of adolescents, some last adjustments (e.g., changing colours and adding a game board) were made, which led to the final version of the game, All Voices Count., Conclusions: Working together with adolescents, All Voices Count, a patient engagement game was developed. This game provides clinicians with a tool that supports shared decision-making to address adolescents' wishes and needs., Patient or Public Contribution: Paediatric patients, clinicians, researchers, youth panel of Fonds NutsOhra and patient associations (Patient Alliance for Rare and Genetic Diseases, Dutch Childhood Cancer Organization) were involved in all phases of the development of the patient engagement game-from writing the project plan to the final version of the game., (© 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Introduction: Patient engagement in patient‐oriented research (POR) is described as patients collaborating as active and equal research team members (patient research partners [PRPs]) on the health research projects and activities that matter to them. The Canadian Institutes of Health Research (CIHR), Canada's federal funding agency for health research, asks that patients be included as partners early, often and at as many stages of the health research process as possible. The objective of this POR project was to co‐build an interactive, hands‐on training programme that could support PRPs in understanding the processes, logistics and roles of CIHR grant funding applications. We also conducted a patient engagement evaluation, capturing the experiences of the PRPs in co‐building the training programme. Methods: This multiphased POR study included a Working Group of seven PRPs with diverse health and health research experiences and two staff members from the Patient Engagement Team. Seven Working Group sessions were held over the 3‐month period from June to August 2021. The Working Group worked synchronously (meeting weekly online via Zoom) as well as asynchronously. A patient engagement evaluation was conducted after the conclusion of the Working Group sessions using a validated survey and semi‐structured interviews. Survey data were analysed descriptively and interview data were analysed thematically. Results: The Working Group co‐built and co‐delivered the training programme about the CIHR grant application process for PRPs and researchers in five webinars and workshops. For the evaluation of patient engagement within the Working Group, five out of seven PRPs completed the survey and four participated in interviews. From the survey, most PRPs agreed/strongly agreed to having communication and supports to engage in the Working Group. The main themes identified from the interviews were working together‐communication and supports; motivations for joining and staying; challenges to contributing; and impact of the Working Group. Conclusion: This training programme supports and builds capacity for PRPs to understand the grant application process and offers ways by which they can highlight the unique experience and contribution they can bring to each project. Our co‐build process presents an example and highlights the need for inclusive approaches, flexibility and individual thinking and application. Patient or Public Contribution: The objective of this project was to identify the aspects of the CIHR grant funding application that were elemental to having PRPs join grant funding applications and subsequently funded projects, in more active and meaningful roles, and then to co‐build a training programme that could support PRPs to do so. We used the CIHR SPOR Patient Engagement Framework, and included time and trust, in our patient engagement approaches to building a mutually respectful and reciprocal co‐learning space. Our Working Group included seven PRPs who contributed to the development of a training programme. We suggest that our patient engagement and partnership approaches, or elements of, could serve as a useful resource for co‐building more PRP‐centred learning programmes and tools going forward. [ABSTRACT FROM AUTHOR]

Background: Palliative care (PC) is an added layer of support provided concurrently with cancer care and serves to improve wellbeing and sustain quality of life. Understanding what is meaningful and a priority to patients, their families, and caregivers with lived experience of cancer and PC is critical in supporting their needs and improving their care provision. However, the impacts of engaging cancer patients within the context of PC research remain unknown. Objective: To examine the impacts of engaging individuals with lived experience of cancer and PC as partners in PC research. Methods: An a priori systematic review protocol was registered with PROSPERO (CRD42021286744). Four databases (APA PsycINFO, CINAHL, EMBASE, and MEDLINE) were searched and only published, peer-reviewed primary English studies aligned with the following criteria were included: (1) patients, their families, and/or caregivers with lived experience of cancer and PC; (2) engaged as partners in PC research; and (3) reported the impacts of engaging cancer PC patient partners in PC research. We appraised the quality of eligible studies using the Critical Appraisal Skills Program (CASP) and GRIPP2 reporting checklists. Results: Three studies that included patient partners with lived experience of cancer and PC engaged at all or several of the research stages were identified. Our thematic meta-synthesis revealed impacts (benefits and opportunities) on patient partners (emotional, psychological, cognitive, and social), the research system (practical and ethical) and health care system (service improvements, bureaucratic attitudes, and inaction). Our findings highlight the paucity of evidence investigating the impacts of engaging patients, their families and caregivers with lived experience of cancer and PC, as partners in PC research. Conclusions: The results of this review and meta-synthesis can inform the more effective design of cancer patient partnerships in PC research and the development of feasible and effective strategies given the cancer and PC context patient partners are coming from. [ABSTRACT FROM AUTHOR]

Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national strategy for patient-oriented research (SPOR) patient engagement framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR's key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members. Plain English summary: Albertans4HealthResearch, supported by the Alberta Strategy for Patient-Oriented Research (AbSPORU) Patient Engagement Team, hosted a virtual round table discussion to develop a list of considerations for successful partnerships in patient-oriented research. The group, which consists of active patient partners across the Canadian province of Alberta and some research staff engaged in patient-oriented research, considered advice for academic researchers on how to best partner with patients and community members on health research projects. The group identified four main themes, aligned with the national Strategy for Patient-Oriented Research (SPOR) Patient Engagement Framework, highlighting important considerations for researchers from the patient perspective, providing practical ways to implement SPOR's key principles: inclusiveness, support, mutual respect, and co-building. This commentary considers the process behind this engagement exercise and offers advice directly from active patient research partners on how to fulfill the operational patient engagement mandate. Academic research teams can use this guidance when considering how to work together with patient partners and community members. [ABSTRACT FROM AUTHOR]