La participation des usagers au fonctionnement des établissements de santé :une dynamique encore à construire

Quebec, since the 1970s, and France, starting twenty years later, have strived to give greater consideration to the lay opinion of users in the healthcare system, and more particularly in healthcare institutions. This desire, which is translated in different ways at the institutional level on either side of the Atlantic, has had highly contrasted effects. Although patients’ associations have existed longer in Quebec, they have had difficulty developing and getting mobilized. The impact of their action has thus been weak, even though the mechanism for public representation in healthcare institutions has expanded in recent years. In France, with the agitation caused among healthcare professionals and politicians by the AIDS outbreak and the various resulting health scandals, patient associations quickly established themselves as the major interlocutors of public authorities.Le Québec, depuis les années 1970, et la France, vingt ans plus tard, se sont efforcés de faire en sorte que la parole profane des usagers soit mieux considérée dans le système de santé, et plus particulièrement dans les établissements de santé. Cette volonté, qui s’est traduite de part et d’autre de l’Atlantique de manière différente sur le plan institutionnel, a eu des effets très contrastés. Au Québec, en dépit de leur antériorité, les associations de patients ont eu du mal à se développer et à se mobiliser. L’impact a été faible, lié au fait du manque de vigueur de l’action des associations, et ce, alors même que le dispositif de représentativité de la population dans les établissements de santé s’est étendu ces dernières années. En France, à l’émoi causé chez les professionnels de la santé et les politiciens par l’irruption du SIDA et par les différents scandales sanitaires qui en ont résulté, les associations se sont assez vite imposées comme des interlocuteurs incontournables des pouvoirs publics.Pomey Marie-Pascale, Ghadi Véronique. La participation des usagers au fonctionnement des établissements de santé :une dynamique encore à construire. In: Santé, Société et Solidarité, n°2, 2009. La place des usagers dans le système de santé. pp. 53-61

Le continuum de l’engagement des patients et usagers français

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Patients’, family caregivers’, and professionals’ perspectives on quality of palliative care: A qualitative study

International audienceBACKGROUND:The quality of palliative care is the foremost preoccupation of clinicians, decision-makers, and managers as well as patients and families. Major input from healthcare professionals is required to develop indicators for the quality of palliative care, but the involvement of patients and families is also recognized as essential, even though this is rarely achieved in practice.AIM:The objectives of this study were to identify (1) convergences and divergences in the points of view of different stakeholders (patients, families, healthcare professionals) relative to key elements of the quality of palliative care and (2) avenues for refining existing indicators of quality of palliative care.DESIGN:Cross-sectional qualitative study.SETTING/PARTICIPANTS:There were six settings: two hospital-based palliative care units, one hospice, and three other medical units where a mobile palliative care team intervene. Semi-structured interviews were conducted among 61 patients, families, healthcare professionals, and managers.RESULTS:Four major dimensions of quality of care are deemed critical by patients, their families, and professionals: comprehensive support for the patients themselves, clinical management, involvement of families, and care for the imminently dying person and death. Differences exist between various stakeholders regarding perceptions of some dimensions of quality of care. Avenues for improving current quality of care indicators are identified.CONCLUSION:Our study results can be used to refine or develop quality indicators that truly mirror the points of view of patients and their families and of healthcare professionals

Scientific overview: CSCI – CITAC Annual General Meeting and Young Investigator’s Forum 2012

In 2012, the Annual General Meeting of the Clinical Investigator Trainee Association of Canada – Association des cliniciens-chercheurs en formation du Canada (CITAC – ACCFC) and the Canadian Society of Clinician Investigators (CSCI) was held 19-21 September in Ottawa. Several globally-renowned scientists, including 2012 Friesen International Prize recipient, Dr. Marc Tessier-Lavigne, the CSCI/Royal College Henry Friesen Award recipient, Dr. Morley Hollenberg, and the recipient of the Joe Doupe Young Investigator Award, Dr. Phillip Awadalla, presented on a range of topics on research in basic and translational science in medicine. This year’s CITAC Symposium featured presentations by Dr. Alain Beaudet, Dr. Michael Strong and Dr. Vivek Goel on the Role of Physician Scientists in Public Health and Policy, which was followed by a lively discussion on the role of basic science and clinical research in patient-oriented policy development. This scientific overview highlights the research presented by trainees at both the oral plenary and poster presentation sessions. As at previous meetings, research questions investigated by this year’s trainees span multiple medical disciplines; from basic science to clinical research to medical education. Below is a summary of the presentations showcased at the Young Investigator’s Forum

Scientific overview: CSCI-CITAC Annual General Meeting and Young Investigator’s Forum 2013

The 2013 joint Canadian Society of Clinician Investigators (CSCI)–Clinical Investigator Trainee Association of Canada/Association des cliniciens-chercheurs en formation du Canada (CITAC/ACCFC) annual general meeting(AGM) was held in Ottawa, September 2013. The symposium focused on “Applications of the ‘omics’ to Clinical Practice”, with presentations from Drs. William T. Gibson (University of British Columbia), Julie Ho (University of Manitoba) and David Hwang (University of Toronto), discussing topics of genome, proteome and the microbiome, respectively. Other highlights from the 2013 AGM include presentations by Dr. Salim Yusuf (McMaster University, 2013 CSCI-RCPSC Henry Friesen Award winner), Dr. Gary Lewis (University of Toronto, 2013 CSCI Distinguished Scientist Award winner) and Dr. Michael Taylor (University of Toronto, 2013 Joe Doupe Award winner). The CSCI/CITAC/Friends of CIHR Joint Symposium consisted of presentations from Drs. John Bell (University of Ottawa), Dan Drucker (University of Toronto) and Heather J. Dean (University of Manitoba). Finally, the meeting ended with the presentation “The Power of an Idea to Bring Ideas to Power” by Dr. Harvey V. Fineberg (President, U.S. Institute of Medicine), the winner of the 2013 Henry Friesen International Prize. Also presented at the conference was research by clinician investigator (CI) trainees from across Canada; ie., those enrolled in MD/MSc, MD/PhD or Clinician Investigator Program(CIP) programs. Canadian trainees’ research extended beyond the pillar of biomedical research, covering the spectrum between basic and clinical research, with a focus on the causes of significant morbidity and mortality for Canadians, including cancers, infectious diseases and other maladies. It is this research that we have summarized in this review

Rôle d'interface d'un réseau gérontologique entre les acteurs du sanitaire et du maintien à domicile

International audienceThe increase in the number of elderly people requires a reorganization of patient care based on integrated networks of healthcare and community services. These services enable patients to remain at home, thus avoiding the significant costs incurred as a result of long hospital stays and numerous visits to emergency departments. Despite the interest of policymakers in integrated services, the real impact of gerontological networks remains unknown. This study aims to investigate healthcare professionals' perceptions of the links between the various actors involved in older patient care (professionals, health services and community services) and to examine the perceived impact of a gerontological network among a range of different actors. The qualitative study conducted as part of this research examined the Parisian gerontological network Ancrage and its partners based on three main data sources: Ancrage documentation; interviews with 40 healthcare professionals; and observations (inter-service meetings and case management meetings). The data were analyzed using qualitative research methods. Data analysis highlighted three characteristics: the central role of the general practitioner, who remains responsible for the trajectory of care; the relevance of the geriatrician's interventions in the case of severely dependent patients and the assessment of older patients' needs; and the interface between hospitals, general practitioners and homecare professionals. Healthcare professionals highlighted improvements in patients' transition between home and hospital. Two particular areas for improvement emerged from the data. The relationship between the case manager and general practitioners was found to be akin to a delegation of homecare responsibilities and has little impact on practices and relationships between actors. In addition, although geriatricians are gaining in legitimacy, collaboration with general practitioners remains limite

Development and validation of a French questionnaire concerning patients’ perspectives of the quality of palliative care: the QUALI-PALLI-Patient

Abstract Background Indicators for the quality of palliative care are a priority of caregivers and managers to allow improvement of various care settings and their comparison. The involvement of patients and families is of paramount, although this is rarely achieved in practice. No validated assessment tools are available in French. Simple cultural adaption of existing questionnaires may be insufficient, due to the varying organization of care in different countries. The purpose of this study was to develop and validate a new instrument to measure the quality of palliative care and satisfaction from the patient point of view. Methods Results from a qualitative study were used by a multi-professional workgroup to construct an initial set of 42 items exploring six domains. A cross-sectional survey was conducted in seven hospitals, encompassing three care settings: two palliative care units, one palliative care hospital, and four standard medical units with a mobile palliative care team. All items were assessed for acceptability. We conducted exploratory structural analysis using Principal Component Analysis (PCA), and evaluated external validity by comparison against global rating of satisfaction and the MD Anderson Symptom Inventory (MDASI) questionnaire. Results A total of 214 patients completed the questionnaire. After removing 7 items from the response distribution, PCA identified eight interpretable domains from the 35 final items: availability of caregivers, serenity, quality of information, pain management, caregivers’ listening skills, psychosocial and spiritual aspects, possibility to refuse (care or volunteers), and respect for the patient. Internal consistency was good or acceptable for all subscales (Cronbach’s α 0.5–0.84), except the last one (0.15). Factorial structure was found globally maintained across subgroups defined by age, sex, Palliative Performance Scale (PPS ≥ 60%, 40–50% and ≤ 30%), and care settings. General satisfaction was inversely correlated with the 2 scores of the MDASI questionnaire: symptoms’ severity and impact on life. Each subscale, except “possibility to refuse”, correlated with general satisfaction. Conclusions Quali-Palli-Pat appears to be a valid, reliable, and well-accepted French tool to explore the quality of care and the satisfaction of palliative care patients. It should be confirmed in a wider sample of care settings. Trial registration clinicaltrials.gov NCT02814682, registration date 28.6.2016