Preliminary investigation at the beginning of this research showed that informatics on point-of-care (POC) devices was limited to basic data generation and processing. This thesis is based on publications of several studies during the course of the research. The aim of the research is to model and analyse information generation and exchange in telehealth systems and to identify and analyse the capabilities of these systems in managing chronic diseases which utilise point-of-care devices. The objectives to meet the aim are as follows: (i) to review the state-of-the-art in informatics and decision support on point-of-care devices. (ii) to assess the current level of servitization of POC devices used within the home environment. (iii) to identify current models of information generation and exchange for POC devices using a telehealth perspective. (iv) to identify the capabilities of telehealth systems. (v) to evaluate key components of telehealth systems (i.e. POC devices and intermediate devices). (vi) to analyse the capabilities of telehealth systems as enablers to a healthcare policy. The literature review showed that data transfer from devices is an important part of generating information. The implication of this is that future designs of devices should have efficient ways of transferring data to minimise the errors that may be introduced through manual data entry/transfer. The full impact of a servitized model for point-of-care devices is possible within a telehealth system, since capabilities of interpreting data for the patient will be offered as a service (c.f. NHS Direct). This research helped to deduce components of telehealth systems which are important in supporting informatics and decision making for actors of the system. These included actors and devices. Telehealth systems also help facilitate the exchange of data to help decision making to be faster for all actors concerned. This research has shown that a large number of capability categories existed for the patients and health professionals. There were no capabilities related to the caregiver that had a direct impact on the patient and health professional. This was not surprising since the numbers of caregivers in current telehealth systems was low. Two types of intermediate devices were identified in telehealth systems: generic and proprietary. Patients and caregivers used both types, while health professionals only used generic devices. However, there was a higher incidence of proprietary devices used by patients. Proprietary devices possess features to support patients better thus promoting their independence in managing their chronic condition. This research developed a six-step methodology for working from government objectives to appropriate telehealth capability categories. This helped to determine objectives for which a telehealth system is suitable.

Contexte : Les médecins spécialistes peuvent participer aux soins ambulatoires des personnes atteintes de maladies chroniques (MCs) et comorbidité comme co-gestionnaire ou consultant selon qu’ils sont responsables ou non du suivi du patient. Il y a un manque d’évidences sur les déterminants et l’impact du type d’implication du médecin spécialiste, ainsi que sur la façon optimale de mesurer la comorbidité pour recueillir ces évidences. Objectifs : 1) déterminer chez les patients atteints de MCs les facteurs associés à la cogestion en spécialité, dont les caractéristiques des organisations de première ligne et la comorbidité; 2) évaluer si le type d’implication du spécialiste influence le recours à l’urgence; 3) identifier et critiquer les méthodes de sélection d’un indice de comorbidité pour la recherche sur l’implication des spécialistes dans le suivi des patients. Méthodologie : 709 adultes (65 +/- 11 ans) atteints de diabète, d’arthrite, de maladie pulmonaire obstructive chronique ou d’insuffisance cardiaque furent recrutés dans 33 cliniques de première ligne. Des enquêtes standardisées ont permis de mesurer les caractéristiques des patients (sociodémographiques, comorbidité et qualité de vie) et des cliniques (modèle, ressources). L’utilisation des services de spécialistes et de l’urgence fut mesurée avec une base de données médico-administratives. Des régressions logistiques multivariées furent utilisées pour modéliser les variables associées à la cogestion et comparer le recours à l’urgence selon le type d’implication du spécialiste. Une revue systématique des études sur l’utilisation des services de spécialistes, ainsi que des revues sur les indices de comorbidité fut réalisée pour identifier les méthodes de sélection d’un indice de comorbidité utilisées et recommandées. Résultats : Le tiers des sujets a utilisé les services de spécialistes, dont 62% pour de la cogestion. La cogestion était associée avec une augmentation de la gravité de la maladie, du niveau d’éducation et du revenu. La cogestion diminuait avec l’âge et la réception de soins dans les cliniques avec infirmière ayant un rôle innovateur. Le recours à l’urgence n’était pas influencé par l’implication du spécialiste, en tant que co-gestionnaire (OR ajusté = 1.06, 95%CI = 0.61-1.85) ou consultant (OR ajusté = 0.97, 95%CI = 0.63-1.50). Le nombre de comorbidités n’était pas associé avec la cogestion, ni l’impact du spécialiste sur le recours à l’urgence. Les revues systématiques ont révélé qu’il n’y avait pas standardisation des procédures recommandées pour sélectionner un indice de comorbidité, mais que 10 critères concernant principalement la justesse et l’applicabilité des instruments de mesure pouvaient être utilisés. Les études sur l’utilisation des services de spécialistes utilisent majoritairement l’indice de Charlson, mais n’en expliquent pas les raisons. Conclusion : L’implication du spécialiste dans le suivi des patients atteints de MCs et de comorbidité pourrait se faire essentiellement à titre de consultant plutôt que de co-gestionnaire. Les organisations avec infirmières ayant un rôle innovateur pourraient réduire le besoin pour la cogestion en spécialité. Une méthode structurée, basée sur des critères standardisés devrait être utilisée pour sélectionner l’indice de comorbidité le plus approprié en recherche sur les services de spécialistes. Les indices incluant la gravité des comorbidités seraient les plus pertinents à utiliser. / Background: Medical specialist physicians can be involved either as comanagers (responsible for follow-up of patients) or consultants (provide advice/specialized interventions) in the care of patients with chronic diseases (CDs) managed in a primary health care (PHC) setting. Evidences concerning determinants and impact of type of specialist involvement are currently lacking, in particular the influence of comorbidity and how best to measure this factor. Objectives: The objectives were 1) to determine clinical, patient and PHC organizational characteristics associated with type of specialist involvement in patients with CDs; 2) to assess whether type of specialist involvement is associated with emergency department (ED) use and; 3) to identify methods for selecting a comorbidity index for specialist services research. Methods: 709 adults (65 +/- 11 years) with diabetes, heart failure, arthritis, or chronic obstructive pulmonary disease were recruited in 33 PHC practices. Standardized surveys were used to measure patient (gender, age, education, income, comorbidity, quality of life) and practice characteristics (model, remuneration mode, resources, role of nurse). Information on specialist services and ED use was procured from the Quebec physician claims database. We used multivariate logistic regression to 1) model variables associated with being comanaged and 2) compare ED use among persons with different types of specialist involvement. We conducted two systematic reviews: 1) review articles on comorbidity indices to identify proposed selection procedures and 2) studies on specialist services utilization to identify selection processes actually used. Results: One third of our sample saw a specialist; the majority (62%) was as a comanager. Comanagement was associated with higher disease severity, younger age, higher education level and income and primary care management in practices without a nurse in advanced practice role. There was no difference in rates of ED use over one year between patients with or without specialist involvement, either as a comanager (adjusted OR = 1.06, 95%CI = 0.61-1.85) or as a consultant (adjusted OR = 0.97, 95%CI = 0.63-1.50). Quantity of comorbidity was not associated with either comanagement or impact of specialist involvement on ED use. Our systematic review revealed no standardized selection process of a comorbidity index. However, 10 distinct criteria related to accuracy and applicability of a measurement scale or validity of reported studies were compiled. Studies on specialist services utilization mostly used the Charlson comorbidity index, but none justified their choice. Conclusion: Specialist support in the management of patients with CDs and comorbidity should be provided on a consultant basis. The PHC practice model with a nurse in an advanced practice role may reduce the need for specialist comanagement. When adjusting for comorbidity, researchers should use a structured process to select the appropriate index based on standard criteria such as validity and applicability. Indices considering severity of comorbidities may be more useful than sole disease count in specialist services research.

Les systèmes de santé accordent une attention croissante au point de vue des usagers dans l’organisation de l’offre de soins. L’instauration d’une offre de soins sensible aux besoins et préférences des patients constitue un enjeu majeur de qualité et d’efficacité des soins. Ce travail analyse le point de vue des patients pour l’offre de soins de médecine générale en utilisant différentes méthodes permettant d’obtenir des informations complémentaires en termes d’expérience de soins, de satisfaction, d’importance ou encore de préférences. Il s’agit des méthodes Delphi, de classement du meilleur au pire et de révélation des préférences par les choix discrets. Ces méthodes sont appliquées sur deux échantillons : en population générale pour la première et chez des patients poly-pathologiques pour les 2 autres afin d’identifier les principaux enjeux actuels et à venir de la réorganisation de l’offre de soins de médecine générale du point de vue des patients. Les résultats montrent le rôle central de la relation médecin-patient et plus particulièrement de l’échange d‘informations entre le médecin et le patient. Cependant une relation médecin-patient de qualité ne doit pas pour autant être réalisée au détriment de la qualité technique du soin et de la coordination de la prise en charge du patient. Ce travail montre également l’importance de prendre en compte l’expérience de soins des patients lors de l’analyse de leur point de vue, et plus particulièrement de leur disposition au changement. L’évaluation systématique et régulière des préférences des patients en pratique quotidienne peut permettre d’améliorer la communication médecin-patient ainsi que le contenu de l’offre de soins du point de vue des patients. / The healthcare systems are paying a great interest to the patients’ perspective for the organization of health care provision. Healthcare system which is accountable and responsive of patients’ needs and preferences is a major issue for the quality and efficiency of care. In this thesis, we analyze the views of patients for the supply of GP care in using different complementary methods about patients’ experience, satisfaction, importance or preferences. These methods are applied to a sample of patients in GP and to a sample of chronically ill patients in order to identify current and future major issues for the reorganization of GP care from the patients’ perspective. The results show the main role of the doctor-patient relationship and especially of the information exchange between doctor and patient and between patient and doctor. However the quality of the doctor-patient relationship is not enough. The technical quality of care (i.e. thoroughness) and the coordination are of high importance for patients. This work highlights that it is necessary to take into account the patients’ experiences in the analysis of their perspective (e.g. preferences) to fully and appropriately understand the results, especially in terms of willingness to change. The systematic and regular screening of patient preferences in daily GP practice can improve the doctor-patient communication and the content of the provision of care from the perspective of patients.

Background: Modern health systems are increasingly faced with the challenge to provide effective, affordable and accessible health care for people with chronic conditions. As evidence on the specific unmet needs and their impact on health outcomes is limited, practical research is needed to tailor chronic care to individual needs of patients with diabetes. Qualitative approaches to describe professional and informal caregiving will support understanding the complexity of chronic care. Results are intended to provide practical recommendations to be used for systematic implementation of sustainable chronic care models. Method: A mixed method study was conducted. A standardised survey (n = 92) of experts in chronic care using mail responses to open-ended questions was conducted to analyse existing chronic care programs focusing on effective, problematic and missing components. An expert workshop (n = 22) of professionals and scientists of a European funded research project MANAGE CARE was used to define a limited number of unmet needs and priorities of elderly patients with type 2 diabetes mellitus and comorbidities. This list was validated and ranked using a multilingual online survey (n = 650). Participants of the online survey included patients, health care professionals and other stakeholders from 56 countries. Results: The survey indicated that current care models need to be improved in terms of financial support, case management and the consideration of social care. The expert workshop identified 150 patient needs which were summarised in 13 needs dimensions. The online survey of these pre-defined dimensions revealed that financial issues, education of both patients and professionals, availability of services as well as health promotion are the most important unmet needs for both patients and professionals. Conclusion: The study uncovered competing demands which are not limited to medical conditions. The findings emphasise that future care models need to focus stronger on individual patient needs and promote their active involvement in co-design and implementation. Future research is needed to develop new chronic care models providing evidence-based and practical implications for the regional care setting.

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