Engaging with peers to integrate community care: Knowledge synthesis and conceptual map.

CONTEXT: Engaging with peers is gaining increasing interest from healthcare systems in numerous countries. Peers are people who offer support by drawing on lived experiences of significant challenges or 'insider' knowledge of communities. Growing evidence suggests that peers can serve as a bridge between underserved communities and care providers across sectors, through their ability to build trust and relationships. Peer support is thus seen as an innovative way to address core issues of formal healthcare, particularly fragmentation of care and health inequalities. The wide body of approaches, goals and models of peer support speaks volumes of such interest. Navigating the various labels used to name peers, however, can be daunting. Similar terms often hide critical differences. OBJECTIVES/BACKGROUND: This article seeks to disentangle the conceptual multiplicity of peer support, presenting a conceptual map based on a 3-year knowledge synthesis project involving peers and programme stakeholders in Canada, and international scientific and grey literature. SYNTHESIS/MAIN RESULTS: The map introduces six key questions to navigate and situate peer support approaches according to peers' roles, pathways and settings of practice, regardless of the terms used to label them. As a tool, it offers a broad overview of the different ways peers contribute to integrating health and community care. DISCUSSION: We conclude by discussing the map's potential and limitations to establish a common language and bridge models, in support of knowledge exchange among practitioners, policymakers and researchers. PATIENT OR PUBLIC CONTRIBUTION: Our team includes one experienced peer support worker. She contributed to the design of the conceptual map and the production of the manuscript. More than 10 peers working across Canada were also involved during research meetings to validate and refine the conceptual map.

Integrating accompanying patients into clinical oncology teams: limiting and facilitating factors.

OBJECTIVES: Since 2018, four establishments in Quebec have been instrumental in implementing the PAROLE-Onco program, which introduced accompanying patients (APs) into healthcare teams to improve cancer patients' experience. APs are patient advisors who have acquired specific experiential knowledge related to living with cancer, using services, and interacting with healthcare professionals. They are therefore in a unique and reliable position to be able to provide emotional, informational, cognitive and navigational support to patients who are dealing with cancer. We aimed to explore APs' perspectives regarding the limiting and facilitating factors in terms of how they are integrated into the clinical oncology teams. METHODS: A qualitative study based on semi-structured interviews and focus groups was conducted with 20 APs at the beginning of their intervention (T1) and, two years later, during a second data collection (T2). Limiting and facilitating factors of APs' integration into clinical teams were analyzed in terms of governance, culture, resources and tools. RESULTS: The limited factors raised by APs to be integrated into clinical teams include the following: confusion about the specific roles played by APs, lifting the egos of certain professionals who feel they are already doing what APs typically do, lack of identification of patient needs, absence of APs in project governance organizational boundaries, and team members' availability. Various communication challenges were also raised, resulting in the program being inadequately promoted among patients. Also mentioned as limiting factors were the lack of time, space and compensation. Creating opportunities for team members to meet with APs, building trust and teaching team members how APs' activities complement theirs were enhancing factors. Other facilitators include APs being involved in decision-making committees, being leaders in promoting the PAROLE-Onco program to patients and clinical team members and creating opportunities to communicate with team members to help enhance their work and provide feedback to improve patient services. Awareness of APs' added value for the team and patients is also a key facilitator. Regarding tools, offering accompanying services by telephone allows both patients and APs to benefit from the flexibility they need. CONCLUSION: Over time, APs were able to identify optimal factors for successful implementation. Recommendations include APs and professionals working in co-construction on organization, leadership, resources and status factors. This could help catalyze a change in culture within health establishments and allow people dealing with cancer to benefit from the experiential knowledge of other patients within their clinical team.

Modeling early germline immunization after horizontal transfer of transposable elements reveals internal piRNA cluster heterogeneity.

BACKGROUND: A fraction of all genomes is composed of transposable elements (TEs) whose mobility needs to be carefully controlled. In gonads, TE activity is repressed by PIWI-interacting RNAs (piRNAs), a class of small RNAs synthesized by heterochromatic loci enriched in TE fragments, called piRNA clusters. Maintenance of active piRNA clusters across generations is secured by maternal piRNA inheritance providing the memory for TE repression. On rare occasions, genomes encounter horizontal transfer (HT) of new TEs with no piRNA targeting them, threatening the host genome integrity. Naïve genomes can eventually start to produce new piRNAs against these genomic invaders, but the timing of their emergence remains elusive. RESULTS: Using a set of TE-derived transgenes inserted in different germline piRNA clusters and functional assays, we have modeled a TE HT in Drosophila melanogaster. We have found that the complete co-option of these transgenes by a germline piRNA cluster can occur within four generations associated with the production of new piRNAs all along the transgenes and the germline silencing of piRNA sensors. Synthesis of new transgenic TE piRNAs is linked to piRNA cluster transcription dependent on Moonshiner and heterochromatin mark deposition that propagates more efficiently on short sequences. Moreover, we found that sequences located within piRNA clusters can have different piRNA profiles and can influence transcript accumulation of nearby sequences. CONCLUSIONS: Our study reveals that genetic and epigenetic properties, such as transcription, piRNA profiles, heterochromatin, and conversion efficiency along piRNA clusters, could be heterogeneous depending on the sequences that compose them. These findings suggest that the capacity of transcriptional signal erasure induced by the chromatin complex specific of the piRNA cluster can be incomplete through the piRNA cluster loci. Finally, these results have revealed an unexpected level of complexity that highlights a new magnitude of piRNA cluster plasticity fundamental for the maintenance of genome integrity.

An exploratory cross-sectional study of the effects of ongoing relationships with accompanying patients on cancer care experience, self-efficacy, and psychological distress.

BACKGROUND: Centre hospitalier de l'Université de Montréal in Canada introduced accompanying patients (APs) into the breast cancer care trajectory. APs are patients who have been treated for breast cancer and have been integrated into the clinical team to expand the services offered to people affected by cancer. This study describes the profiles of the people who received the support and explores whether one-offs vs ongoing encounters with APs influence their experience of care, on self-efficacy in coping with cancer, and on their level of psychological distress. METHODS: An exploratory cross-sectional study was carried out among patients to compare patients who had one encounter with an AP (G1) with those who had had several encounters (G2). Five questionnaires were administered on socio-demographic characteristics, care pathway, evaluation of the support experience, self-efficacy in coping with cancer, and level of psychological distress. Logbooks, completed by the APs, determined the number of encounters. Linear regression models were used to evaluate the associations between the number of encounters, patient characteristics, care pathway, number of topics discussed, self-efficacy measures in coping with cancer, and level of psychological distress. RESULTS: Between April 2020 and December 2021, 60% of 535 patients who were offered support from an AP accepted. Of these, one hundred and twenty-four patients participated in the study. The study aimed to recruit a minimum of 70 patients with the expectation of obtaining at least 50 participants, assuming a response rate of 70%. There were no differences between G1 and G2 in terms of sociodemographic data and care pathways. Statistical differences were found between G1 and G2 for impacts on and the return to daily life (p = 0.000), the return to the work and impacts on professional life (p = 0.044), announcement of a diagnosis to family and friends (p = 0.033), and strategies for living with treatment under the best conditions (p = 0.000). Significant differences were found on the topics of cancer (p = 0.000), genetic testing (p = 0.023), therapeutic options (p = 0.000), fatigue following treatment (p = 0.005), pain and discomfort after treatment or surgery (p = 0.000), potential emotions and their management (p = 0.000) and the decision-making processes (p = 0.011). A significant relationship was found between the two groups for patients' ability to cope with cancer (p = 0.038), and their level of psychological distress at different stages of the care pathway (p = 0.024). CONCLUSIONS: This study shows differences between one-time and ongoing support for cancer patients. It highlights the potential for APs to help patients develop self-efficacy and cope with the challenges of cancer treatment.

Accompanying patients in clinical oncology teams: Reported activities and perceived effects.

INTRODUCTION: Since 2018, four establishments in Quebec, Canada, have decided to implement the PAROLE-Onco programme, which introduced accompanying patients (APs) in healthcare teams to improve the experience of cancer patients. APs are patient advisors who have had a cancer treatment experience and who conduct consultations to complement the service offered by providing emotional, informational and educational support to patients undergoing treatments (e.g., radiotherapy, chemotherapy, surgery), mostly for breast cancer. We aimed to explore the evolution of APs' perspectives regarding their activities within the clinical oncology teams as well as the perceived effects of their intervention with patients, the clinical team and themselves. METHODS: A qualitative study based on semistructured interviews and focus groups was conducted with APs at the beginning of their intervention (T1) and 2 years afterwards (T2). The themes discussed were APs' activities and the perceived effects of their interventions on themselves, on the patients and on the clinical team. RESULTS: In total, 20 APs were interviewed. In T2, APs' activities shifted from listening and sharing experiences to empowering patients by helping them become partners in their care and felt generally more integrated into the clinical team. APs help patients feel understood and supported, alleviate stress and become partners in the care they receive. They also alleviate the clinical team's workload by offering a complementary service through emotional support, which, according to them, helps patients feel calmer and more prepared for their appointments with healthcare professionals. They communicate additional information about their patients' health journey, which makes the appointment more efficient for healthcare professionals. When APs accompany patients, they feel as if they can make a difference in patients' lives. Their activities are perceived by some as an opportunity to give back but also as a way of giving meaning to their own experience, in turn serving as a learning experience. CONCLUSION: By mobilizing their experiential knowledge, APs provide emotional, informational, cognitive and navigational support, which allows patients to be more empowered in their care and which complements professionals' scientific knowledge, thereby helping to refine their sensitivity to the patients' experiences. PATIENT OR PUBLIC CONTRIBUTION: Two patient-researchers have contributed to the study design, the conduct of the study, the data analysis and interpretation, as well as in the preparation and writing of this manuscript.

The Ecology of Engagement: Fostering cooperative efforts in health with patients and communities.

CONTEXT: Patients and community members are engaged in nearly every aspect of health systems. However, the engagement literature remains siloed and fragmented, which makes it difficult to connect engagement efforts with broader goals of health, equity and sustainability. Integrated and inclusive models of engagement are needed to support further transformative efforts. METHODS: This article describes the Ecology of Engagement, an integrated model of engagement. The model posits that: (1) Health ecosystems include all members of society engaged in health; (2) Engagement is the 'together' piece of health and healthcare (e.g., caring for each other, preventing, researching, teaching and building policies together); (3) Health ecosystems and engagement are interdependent from each other, both influencing health, equity, resilience and sustainability. CONCLUSION: The Ecology of Engagement offers a common sketch to foster dialogue on engagement across health ecosystems. The model can drive cooperative efforts with patients and communities on health, equity, resilience and sustainability. PATIENTS AND PUBLIC CONTRIBUTION: Three of the authors have lived experiences as patients. One has a socially disclosed identity as a patient partner leader with extensive experience in engagement (individual care, education, research, management and policy). Two authors have significant experience as patients and informal caregivers, which were mobilized in descriptive illustrations. A fourth author has experience as an engaged citizen in health policy debates. All authors have professional lived experience in health (manager, researcher, health professional, consultant and educator). Six patient and caregiver partners with lived experience of engagement (other than the authors) contributed important revisions and intellectual content.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

Assessing and promoting partnership between patients and health-care professionals: Co-construction of the CADICEE tool for patients and their relatives.

CONTEXT: Partnership between patients and health-care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs. OBJECTIVE: To co-construct a tool for measuring the degree of partnership between patients and HCPs. DESIGN: The CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co-construct the tool; (3) assess face and content validity from patients' and HCPs' viewpoints; and (4) assess the usability of the tool and explore its measurement performance. RESULTS: The CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise. Assessment of the tool's usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity. CONCLUSIONS: The CADICEE tool is developed in co-construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health-care settings. PATIENT OR PUBLIC CONTRIBUTION: Patients were involved in determining the importance of constructing this questionnaire. They co-constructed it, pre-tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.

Partnering with patients in healthcare research: a scoping review of ethical issues, challenges, and recommendations for practice.

BACKGROUND: Partnering with patients in healthcare research now benefits from a strong rationale and is encouraged by funding agencies and research institutions. However, this new approach raises ethical issues for patients, researchers, research professionals and administrators. The main objective of this review is to map the literature related to the ethical issues associated with patient partnership in healthcare research, as well as the recommendations to address them. Our global aim is to help researchers, patients, research institutions and research ethics boards reflecting on and dealing with these issues. METHODS: We conducted a scoping review of the ethical issues and recommendations associated with partnering with patients in healthcare research. After our search strategy, 31 peer reviewed articles published between 2007 and 2017 remained and were analyzed. RESULTS: We have identified 58 first-order ethical issues and challenges associated with patient partnership in research, regrouped in 18 second-order ethical themes. Most of the issues are transversal to all phases and stages of the research process and a lot of them could also apply to patient-partnership in other spheres of health, such as governance, quality improvement, and education. We suggested that ethical issues and challenges of partnered research can be related to four ethical frameworks: 1) Research ethics; 2) Research integrity; 3) Organizational ethics, and 4) Relational ethics. CONCLUSIONS: We have identified numerous ethical issues associated with the recent approach of patient-partnership in research. These issues are more diverse than the issues associated with a more traditional research approach. Indeed, the current discussion on how we address ethical issues in research is anchored in the assumption that patients, as research participants, must be protected from risk. However, doing research with, and not on, the patient involves changes in the way we reflect on the ethical issues associated with this approach to research. We propose to broaden the ethical discussion on partnered research to not only rely on a research ethics framework, but to also frame it within the areas of research integrity, organizational ethics and relational ethics.

Patient vs. Community Engagement: Emerging Issues.

BACKGROUND: The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective patient engagement need to be examined to address conducting and accelerating comparative effectiveness research. OBJECTIVES: To examine how various perspectives and diverse training lead investigators and patients to conflicting positions on how best to advance patient engagement. RESEARCH DESIGN: Qualitative methods were used to collect perspectives and models of engagement from a diverse group of patients, researchers and clinicians. The project culminated with a workshop involving these stakeholders. The workshop used a novel approach, combining World Café and Future Search techniques, to compare and contrast aspects of patient engagement and community engagement. SUBJECTS: Participants included patients, researchers, and clinicians. MEASURES: Group and workshop discussions provided the consensus on topics related to patient and community engagement. RESULTS: Participants developed and refined a framework that compares and contrasts features associated with patient and community engagement. CONCLUSIONS: Although patient and community engagement may share a similar approach to engagement based on trust and mutual benefit, there may be distinctive aspects that require a unique lexicon, strategies, tactics, and activities.

Area deprivation and attachment to a general practitioner through centralized waiting lists: a cross-sectional study in Quebec, Canada.

BACKGROUND: Access to primary healthcare is an important social determinant of health and having a regular general practitioner (GP) has been shown to improve access. In Canada, socio-economically disadvantaged patients are more likely to be unattached (i.e. not have a regular GP). In the province of Quebec, where over 30% of the population is unattached, centralized waiting lists were implemented to help patients find a GP. Our objectives were to examine the association between social and material deprivation and 1) likelihood of attachment, and 2) wait time for attachment to a GP through centralized waiting lists. METHODS: A cross-sectional study was conducted in five local health networks in Quebec, Canada, using clinical administrative data of patients attached to a GP between June 2013 and May 2015 (n = 24, 958 patients) and patients remaining on the waiting list as of May 2015 (n = 49, 901), using clinical administrative data. Social and material area deprivation indexes were used as proxies for patients' socio-economic status. Multiple regressions were carried out to assess the association between deprivation indexes and 1) likelihood of attachment to a GP and 2) wait time for attachment. Analyses controlled for sex, age, local health network and variables related to health needs. RESULTS: Patients from materially medium, disadvantaged and very disadvantaged areas were underrepresented on the centralized waiting lists, while patients from socially disadvantaged and very disadvantaged areas were overrepresented. Patients from very materially advantaged and advantaged areas were less likely to be attached to a GP than patients from very disadvantaged areas. With the exception of patients from socially disadvantaged areas, all other categories of social deprivation were more likely to be attached to a GP compared to patients from very disadvantaged areas. We found a pro-rich gradient in wait time for attachment to a GP, with patients from more materially advantaged areas waiting less than those from disadvantaged areas. CONCLUSION: Our findings suggest that there are socio-economic inequities in attachment to a GP through centralized waiting lists. Policy makers should take these findings into consideration to adjust centralized waiting list processes to avoid further exacerbation of health inequities.

Paramutation in Drosophila linked to emergence of a piRNA-producing locus.

A paramutation is an epigenetic interaction between two alleles of a locus, through which one allele induces a heritable modification in the other allele without modifying the DNA sequence. The paramutated allele itself becomes paramutagenic, that is, capable of epigenetically converting a new paramutable allele. Here we describe a case of paramutation in animals showing long-term transmission over generations. We previously characterized a homology-dependent silencing mechanism referred to as the trans-silencing effect (TSE), involved in P-transposable-element repression in the germ line. We now show that clusters of P-element-derived transgenes that induce strong TSE can convert other homologous transgene clusters incapable of TSE into strong silencers, which transmit the acquired silencing capacity through 50 generations. The paramutation occurs without any need for chromosome pairing between the paramutagenic and the paramutated loci, and is mediated by maternal inheritance of cytoplasm carrying Piwi-interacting RNAs (piRNAs) homologous to the transgenes. The repression capacity of the paramutated locus is abolished by a loss-of-function mutation of the aubergine gene involved in piRNA biogenesis, but not by a loss-of-function mutation of the Dicer-2 gene involved in siRNA production. The paramutated cluster, previously producing barely detectable levels of piRNAs, is converted into a stable, strong piRNA-producing locus by the paramutation and becomes fully paramutagenic itself. Our work provides a genetic model for the emergence of piRNA loci, as well as for RNA-mediated trans-generational repression of transposable elements.

Patient and public engagement in research and health system decision making: A systematic review of evaluation tools.

BACKGROUND: Patient and public engagement is growing, but evaluative efforts remain limited. Reviews looking at evaluation tools for patient engagement in individual decision making do exist, but no similar articles in research and health systems have been published. OBJECTIVE: Systematically review and appraise evaluation tools for patient and public engagement in research and health system decision making. METHODS: We searched literature published between January 1980 and February 2016. Electronic databases (Ovid MEDLINE, Embase, Cochrane Database of Systematic Reviews, CINAHL and PsycINFO) were consulted, as well as grey literature obtained through Google, subject-matter experts, social media and engagement organization websites. Two independent reviewers appraised the evaluation tools based on 4 assessment criteria: scientific rigour, patient and public perspective, comprehensiveness and usability. RESULTS: In total, 10 663 unique references were identified, 27 were included. Most of these tools were developed in the last decade and were designed to support improvement of engagement activities. Only 11% of tools were explicitly based on a literature review, and just 7% were tested for reliability. Patients and members of the public were involved in designing 56% of the tools, mainly in the piloting stage, and 18.5% of tools were designed to report evaluation results to patients and the public. CONCLUSION: A growing number of evaluation tools are available to support patient and public engagement in research and health system decision making. However, the scientific rigour with which such evaluation tools are developed could be improved, as well as the level of patient and public engagement in their design and reporting.

Primary health care organizational characteristics associated with better accessibility: data from the QUALICO-PC survey in Quebec.

BACKGROUND: First-contact accessibility remains an important problem in Canada, with this indicator staying the worst of all Organization for Economic Co-operation and Development countries. In the province of Quebec, a number of primary healthcare (PHC) organizations have adopted measures to improve access (e.g. advance access scheduling, expanded nursing role, electronic medical record, financial incentives). The impact of those changes is unknown. The goal of this study is to assess which PHC organizations' characteristics are associated with improved first-contact accessibility. METHODS: We conducted a secondary data analysis of the Quebec survey, conducted as part of the QUALICO-PC study on primary care performance. QUALICO-PC is a cross-sectional study to assess quality, costs and equity in PHC across 35 countries and jurisdictions. Organizational characteristics were measured from the family practitioners' questionnaire. First-contact accessibility was measured from the patient questionnaire filled by patients who received care in the participating PHC organizations. Multi-level logistic regression was used to assess the association of organizational characteristics as predictors of patient-reported accessibility. RESULTS: A total of 218 family practitioners participated in the study with 1798 of their patients. PHC organizations characteristics associated with increased first-contact accessibility included the possibility to have a same-day appointment or to walk in the clinic without an appointment, higher number of physicians per clinic and higher number of hours worked by the family physician. Electronic medical record and expanded nursing role were not associated with increased accessibility. CONCLUSIONS: Same-day access and higher family physician working hours are associated with improved patient-reported accessibility. Other PHC organizations characteristics targeted by recent reforms were not associated with improved accessibility.

A Canadian Take on the International Patient Engagement Revolution.

This Special Issue of Healthcare Quarterly aims to provide an overview of patient and family engagement in healthcare system improvement. It brings together experts (patients, clinicians, researchers, policy makers) from across the country tasked with sharing their experiential learning regarding engagement in the Canadian healthcare system. A team of experts from the Netherlands was added to this group of authors to provide insights into European developments in this area.

Growing a Healthy Ecosystem for Patient and Citizen Partnerships.

Patient and citizen engagement is taking root in a number of healthcare organizations. These initiatives show promising results but require a supportive environment to bring systemic and sustainable impacts. In this synthesis article, we propose an ecosystemic perspective on engagement in health, outlining key elements at the individual, organizational and systemic levels supporting reciprocal and effective relationships among all partners to provide conditions for the co-production of health and care. We argue that growing a healthy engagement ecosystem requires: (1) building local and national "hubs" to facilitate learning and capacity building across engagement domains, populations and contexts; (2) supporting reciprocal partnerships based on co-leadership; and (3) strengthening capacities for research, evaluation and co-training of all partners to support reflective engagement practices that bring about effective change.

Alignment of Canadian Primary Care With the Patient Medical Home Model: A QUALICO-PC Study.

PURPOSE: The patient medical home (PMH) model aims to improve patient satisfaction and health outcomes in Canada, but since its introduction in 2009, there has been no evaluation of the extent to which primary care conforms with PMH attributes. Our objective was to compare current primary care across Canada with the 10 goals of the PMH model. METHODS: A cross-sectional survey of primary care organization and delivery was conducted in Canadian provinces to evaluate the PMH-based attributes of primary care practices. Family physician and patient responses were mapped to the 10 goals of the PMH model. We used regression models to describe the provinces' success in meeting the goals, taking specific practice characteristics into account. We created a PMH composite score by weighting each goal equally for each practice and aggregating these by province. The PMH score is the sum of the values for each goal, which were scored from 0 to 1; a score of 10 indicates that all 10 goals of the PMH model were achieved. RESULTS: Seven hundred seventy-two primary care practices and 7,172 patients participated in the survey. The average national PMH score was 5.36 (range 4.75-6.23) of 10. Ontario was the only province to score significantly higher than Canada as a whole, whereas Québec, Newfoundland/Labrador, and New Brunswick/Prince Edward Island scored below the national average. There was little variation, however, among provinces in achieving the 10 PMH goals. CONCLUSIONS: Provincial PMH scores indicate considerable room for improvement if the PMH goals are to be fully implemented in Canada.

What do we know about the needs and challenges of health systems? A scoping review of the international literature.

BACKGROUND: While there is an extensive literature on Health System (HS) strengthening and on the performance of specific HSs, there are few exhaustive syntheses of the challenges HSs are facing worldwide. This paper reports the findings of a scoping review aiming to classify the challenges of HSs investigated in the scientific literature. Specifically, it determines the kind of research conducted on HS challenges, where it was performed, in which health sectors and on which populations. It also identifies the types of challenge described the most and how they varied across countries. METHODS: We searched 8 databases to identify scientific papers published in English, French and Italian between January 2000 and April 2016 that addressed HS needs and challenges. The challenges reported in the articles were classified using van Olmen et al.'s dynamic HS framework. Countries were classified using the Human Development Index (HDI). Our analyses relied on descriptive statistics and qualitative content analysis. RESULTS: 292 articles were included in our scoping review. 33.6% of these articles were empirical studies and 60.1% were specific to countries falling within the very high HDI category, in particular the United States. The most frequently researched sectors were mental health (41%), infectious diseases (12%) and primary care (11%). The most frequently studied target populations included elderly people (23%), people living in remote or poor areas (21%), visible or ethnic minorities (15%), and children and adolescents (15%). The most frequently reported challenges related to human resources (22%), leadership and governance (21%) and health service delivery (24%). While health service delivery challenges were more often examined in countries within the very high HDI category, human resources challenges attracted more attention within the low HDI category. CONCLUSIONS: This scoping review provides a quantitative description of the available evidence on HS challenges and a qualitative exploration of the dynamic relationships that HS components entertain. While health services research is increasingly concerned about the way HSs can adopt innovations, little is known about the system-level challenges that innovations should address in the first place. Within this perspective, four key lessons are drawn as well as three knowledge gaps.

A network perspective on patient experiences and health status: the Medical Expenditure Panel Survey 2004 to 2011.

BACKGROUND: There is a growing emphasis on the need to engage patients in order to improve the quality of health care and improve health outcomes. However, we are still lacking a comprehensive understanding on how different measures of patient experiences interact with one another or relate to health status. This study takes a network perspective to 1) study the associations between patient characteristics and patient experience in health care and 2) identify factors that could be prioritized to improve health status. METHODS: This study uses data from the two-year panels from the Medical Expenditure Panel Survey (MEPS) initiated between 2004 and 2011 in the United States. The 88 variables regarding patient health and experience with health care were identified through the MEPS documentation. Sex, age, race/ethnicity, and years of education were also included for analysis. The bnlearn package within R (v3.20) was used to 1) identify the structure of the network of variables, 2) assess the model fit of candidate algorithms, 3) cross-validate the network, and 4) fit conditional probabilities with the given structure. RESULTS: There were 51,023 MEPS interviewees aged 18 to 85 years (mean = 44, 95% CI = 43.9 to 44.2), with years of education ranging from 1 to 19 (mean = 7.4, 95% CI = 7.40 to 7.46). Among all, 55% and 74% were female and white, respectively. There were nine networks identified and 17 variables not linked to others, including death in the second years, sex, entry years to the MEPS, and relations of proxies. The health status in the second years was directly linked to that in the first years. The health care ratings were associated with how often professionals listened to them and whether professionals' explanation was understandable. CONCLUSIONS: It is feasible to construct Bayesian networks with information on patient characteristics and experiences in health care. Network models help to identify significant predictors of health care quality ratings. With temporal relationships established, the structure of the variables can be meaningful for health policy researchers, who search for one or a few key priorities to initiate interventions or health care quality improvement programs.

Assessing the performance of centralized waiting lists for patients without a regular family physician using clinical-administrative data.

BACKGROUND: With 4.6 million patients who do not have a regular family physician, Canada performs poorly compared to other OECD countries in terms of attachment to a family physician. To address this issue, several provinces have implemented centralized waiting lists to coordinate supply and demand for attachment to a family physician. Although significant resources are invested in these centralized waiting lists, no studies have measured their performance. In this article, we present a performance assessment of centralized waiting lists for unattached patients implemented in Quebec, Canada. METHODS: We based our approach on the Balanced Scorecard method. A committee of decision-makers, managers, healthcare professionals, and researchers selected five indicators for the performance assessment of centralized waiting lists, including both process and outcome indicators. We analyzed and compared clinical-administrative data from 86 centralized waiting lists (GACOs) located in 14 regions in Quebec, from April 1, 2013, to March 31, 2014. RESULTS: During the study period, although over 150,000 patients were attached to a family physician, new requests resulted in a 30% median increase in patients on waiting lists. An inverse correlation of average strength was found between the rates of patients attached to a family physician and the proportion of vulnerable patients attached to a family physician meaning that as more patients became attached to an FP through GACOs, the proportion of vulnerable patients became smaller (r = -0.31, p < 0.005). The results showed very large performance variations both among GACOs of different regions and among those of a same region for all performance indicators. CONCLUSIONS: Centralized waiting lists for unattached patients in Quebec seem to be achieving their twofold objective of attaching patients to a family physician and giving priority to vulnerable patients. However, the demand for attachment seems to exceed the supply and there appears to be a tension between giving priority to vulnerable patients and attaching of a large number of patients. Results also showed heterogeneity in the performance of centralized waiting lists across Quebec. Finally, our findings suggest it is critical that similar mechanisms should use available data to identify the best strategies for reducing variations and improving performance.