Patient and public involvement in healthcare: a systematic mapping review of systematic reviews - identification of current research and possible directions for future research.

Objectives: To provide an overview of patient and public involvement (PPI) in the mesolevel and macrolevel of healthcare (different from PPI in research) and identify directions for future research by mapping contexts, terminology, conceptual frameworks, measured outcomes and research gaps.

Design: Mapping review of systematic reviews. A patient coresearcher (JB) was involved in all stages.

Perspectives of parents with lived experience of cytomegalovirus infection, on universal newborn screening for congenital cytomegalovirus (cCMV) in Canada: a patient-led qualitative study.

Objective: To understand parental perspectives regarding universal newborn screening (UNS) for congenital cytomegalovirus (cCMV) in Canada.

Design: A qualitative, patient-led study using the Patient and Community Engagement Research approach consisting of online focus groups and in-depth individual interviews to understand parental preferences regarding UNS for cCMV. Data were analysed iteratively using inductive thematic analysis and narrative story analysis.

Patient engagement in the development and implementation of navigation services: a scoping review protocol.

Introduction: Patient navigation, a complex health intervention meant to address widespread fragmentation across the healthcare landscape, has been widely adopted internationally. This rapid uptake in patient navigation has led to a broadening of the service's reach to include those of different social positions and different health conditions. Despite the popularity and prevalence of patient navigation programmes, the extent of patient involvement and/or partnership in their construction has yet to be articulated.

Prioritizing Patient Reported Outcome Measures (PROMs) to use in the clinical care of youth living with mental health concerns: a nominal group technique study.

Background: In the past few decades, particularly in the mental health setting, there has been growing interest in using Patient Reported Outcome Measures (PROMs) to assess the efficacy of the treatments in healthcare systems. Despite recent initiatives for global harmonization, there remains a lack of consensus on which PROMs are best practice and appropriate. Engagement of the service users, such as patients and family members/caregivers, is vital at this stage to ensure the selected PROMs are feasible, relevant, and acceptable to them.

Implementing paediatric patient-reported outcome measures in outpatient asthma clinics: a feasibility assessment study.

Objective: Implementation of patient-reported outcome measures (PROMs) is limited in paediatric routine clinical care. The KidsPRO programme has been codesigned to facilitate the implementation of PROMs in paediatric healthcare settings. Therefore, this study (1) describes the development of innovative KidsPRO programme and (2) reports on the feasibility of implementing PedsQL (Pediatric Quality of Life Inventory) PROM in asthma clinics using the KidsPRO programme.

Examining the Relationship Between Screening for Postpartum Depression and Associated Child Health Service Utilization and Costs: A Study Using the All Our Families Cohort and Administrative Data.

Introduction: Despite a recognized association between maternal postpartum depression (PPD) and adverse child health outcomes, evidence examining the relationship between PPD symptoms and associated child health service utilization and costs remains unclear. In addition, there is a paucity of evidence describing the relationship between early identification of maternal PPD and associated health service utilization and costs for children. This study aims to address this gap by describing the secondary associations of screening for maternal PPD and annual health service utilization and costs for children over their first five years of life.

Working together in health research: a mixed-methods patient engagement evaluation.

Background: In patient-oriented research (POR), patients contribute their valuable knowledge and lived-experiences to work together as active research partners at all stages of the health research cycle. However, research looking to understand how patient research partners (PRPs) and researchers work together in meaningful and collaborative ways remains limited. This study aims to evaluate patient engagement with the RePORT Patient Advisory Council (PAC) and to identify barriers and facilitators to meaningful patient engagement encountered within research partnerships involving patient research partners and researchers.

Understanding the chronic pain journey and coping strategies that patients use to manage their chronic pain: a qualitative, patient-led, Canadian study.

Objective: To gain an insight into coping strategies that people living with chronic pain use to self-manage their pain.

Design: This qualitative Patient-oriented Research study used the Patient and Community Engagement Research approach. It was conducted by people with chronic pain lived experience, ensuring that patient perspective and needs were considered and addressed throughout the research cycle.

Co-developing patient and family engagement indicators for health system improvement with healthcare system stakeholders: a consensus study.

Objective: To develop a set of patient and family engagement indicators (PFE-Is) for measuring engagement in health system improvement for a Canadian provincial health delivery system through an evidence-based consensus approach.

Design: This mixed-method, multiphase project included: (1) identification of existing measures of patient and family engagement through a review of the literature and consultations with a diverse provincial council of patients, caregivers, community members and researchers. The Public and Patient Engagement Evaluation Tool (PPEET) was selected; (2) consultations on relevance, acceptability and importance with patient and family advisors, and staff members of Alberta Health Services' Strategic Clinical Networks.

Development and validation of a social vulnerabilities survey for medical inpatients.

Objectives: Our objective was to validate a Social Vulnerabilities Survey that was developed to identify patient barriers in the following domains: (1) salience or priority of health; (2) social support; (3) transportation; and (4) finances.

Design: Cross-sectional psychometric study.Questions for one domain (health salience) were developed de novo while questions for the other domains were derived from national surveys and/or previously validated questionnaires.

Informing the implementation and use of person-centred quality indicators: a mixed methods study on the readiness, barriers and facilitators to implementation in Canada.

Objectives: To ensure optimal implementation of person-centred quality indicators (PC-QIs), we assessed the readiness of Canadian healthcare organisations and explored their perceived barriers and facilitators to implementing and using PC-QIs.

Design: Mixed methods.

Setting And Participants: Representatives of Canadian healthcare delivery and coordinating organisations that guide the development and/or implementation of person-centred care (PCC) measurement.

Immigrant Healthcare Experiences and Impacts During COVID-19: A Cross-Sectional Study in Alberta, Canada.

Primary Health Care is a gateway of healthcare services. The COVID-19 pandemic has modified the process of delivering care. We aimed to assess Albertan's healthcare experiences during the pandemic and compared experiences between Albertans that were born in and outside Canada.

Evaluation of parent and youth experiences in advisory groups as part of a mental healthcare clinical trial: protocol for a mixed-method study.

Introduction: Patient engagement in healthcare research is a necessity to ensure that research objectives align with priorities, outcomes and needs of the population under study, and to facilitate ease of implementation and adoption of findings. In clinical trials, there is an increasing focus on patient engagement during the planning and conduct of clinical trials due to the potential for ethical and methodological benefits. As patient engagement in clinical trials increases, there is a need to evaluate the approaches of these activities to contribute evidence on what is most appropriate and successful.

Drivers of paediatric inpatient experience: retrospective analysis of casemix factors for the Alberta Paediatric Inpatient Experience Survey in Alberta, Canada.

Objective: In Alberta, the Alberta Paediatric Inpatient Experience Survey (APIES) is used as a proxy-reported measure of paediatric experience. To our knowledge, the influence of casemix factors on patient experience as measured by paediatric patient experience surveys have not been reported within Canadian paediatric samples. In this paper, we sought to determine the patient and respondent factors associated with paediatric inpatient experiences in Alberta, Canada.

Co-designing strategies to support patient partners during a scoping review and reflections on the process: a commentary.

Background: Patient partners can be described as individuals who assume roles as active members on research teams, indicative of individuals with greater involvement, increased sharing of power, and increased responsibility than traditionally described by patient participants who are primarily studied. A gap still remains in the understanding of how to engage patients. The objective of this commentary is to describe the involvement of four patient partners who worked with researchers during a scoping review.

Prevalence, clinical characteristics, and outcomes of pediatric COVID-19: A systematic review and meta-analysis.

Introduction: The novel coronavirus pandemic is an ongoing challenge faced by the public and health care systems around the globe. Majority of information and evidence gathered so far regarding COVID-19 has been derived from data and studies in adult populations. Crucial information regarding the characterization, clinical symptomatology, sequelae, and overall outcomes in the pediatric population is lacking.

Patient-Reported Experiences in Accessing Primary Healthcare among Immigrant Population in Canada: A Rapid Literature Review.

(1) Background: Immigrants represent around 21.9% of the total population in Canada and encounter multifaceted obstacles in accessing and receiving primary healthcare. This literature review explores patient experiences in primary care from the perspective of immigrants and identifies areas for further research and improvement.

Improving the quality of person-centred healthcare from the patient perspective: development of person-centred quality indicators.

Importance: International efforts are being made towards a person-centred care (PCC) model, but there are currently no standardised mechanisms to measure and monitor PCC at a healthcare system level. The use of metrics to measure PCC can help to drive the changes needed to improve the quality of healthcare that is person centred.

Objective: To develop and validate person-centred care quality indicators (PC-QIs) measuring PCC at a healthcare system level through a synthesis of the evidence and a person-centred consensus approach to ensure the PC-QIs reflect what matters most to people in their care.

Patients, clinicians and researchers working together to improve cardiovascular health: a qualitative study of barriers and priorities for patient-oriented research.

Objectives: The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta.

Design: This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities.

Identifying areas for improvement in paediatric inpatient care using the Child HCAHPS survey.

Unlabelled: The Child-Hospital Consumer Assessment of Healthcare Providers and Systems (Child-HCAHPS) survey is a validated measure of paediatric inpatient experience. The study objective was to determine which survey questions were most correlated with respondents' overall rating of care. Knowing which questions are most important may provide valuable insights for developing targeted quality improvement initiatives.

Impact of using patient-reported outcome measures in routine clinical care of paediatric patients with chronic conditions: a systematic review protocol.

Introduction: Chronic diseases among children are associated with lower health-related quality of life (HRQOL) and higher utilisation of healthcare services. Integrating Patient-Reported Outcomes Measures (PROMs) in routine clinical care has been shown to reduce utilisation of healthcare services while improving patient outcomes. The objectives of our study are to: (1) identify previously implemented and evaluated PROMs for chronic conditions in paediatric settings; (2) consolidate the evidence to evaluate the impact of using PROMs on HRQOL, healthcare utilisation, patient outcomes (eg, symptoms control) and quality of care among paediatric patients with chronic conditions.

Measuring patient-centred system performance: a scoping review of patient-centred care quality indicators.

Objectives: The shift to the patient-centred care (PCC) model as a healthcare delivery paradigm calls for systematic measurement and evaluation. In an attempt to develop patient-centred quality indicators (PC-QIs), this study aimed to identify quality indicators that can be used to measure PCC.

Methods: Design: scoping review.

How to measure cultural competence when evaluating patient-centred care: a scoping review.

Objectives: The purpose of this study was to identify patient-centred quality indicators (PC-QI) and measures for measuring cultural competence in healthcare.

Design: Scoping review.

Setting: All care settings.

Prospective economic evaluation of an electronic discharge communication tool: analysis of a randomised controlled trial.

Objective: To complete an economic evaluation within a randomised controlled trial (RCT) comparing the use of an electronic discharge communication tool (eDCT) compared with usual care.

Setting: Patients being discharged from a single tertiary care centre's internal medicine Medical Teaching Units.

Participants: Between January 2012 and December 2013, 1399 patients were randomised to a discharge mechanism.

Cytomegalovirus infection after kidney transplantation and long-term graft loss.

Background: Despite the use of prevention strategies, cytomegalovirus (CMV) infection is the most common viral complication after renal transplant and its impact on long-term outcomes is still open to debate.

Objective: To evaluate the incidence of CMV infection and disease during the use of prevention strategies in our centre and to analyse the association between CMV infection and long-term patient and graft survival and other potentially clinical events related with CMV.

Methods: We reviewed the medical records of 377 recipients of kidney transplants performed between January 1998 and December 2008.