FRAMEWORK FOR USER INVOLVEMENT IN HEALTH TECHNOLOGY ASSESSMENT AT THE LOCAL LEVEL: VIEWS OF HEALTH MANAGERS, USER REPRESENTATIVES, AND CLINICIANS.

OBJECTIVES: The aim of this study was to explore stakeholders' points of views regarding the applicability and relevance of a framework for user involvement in health technology assessment (HTA) at the local level. We tested this framework in the context of the assessment of alternative measures to restraint and seclusion among hospitalized adults and those living in long-term-care facilities. METHODS: Twenty stakeholders (health managers, user representatives, and clinicians) from seven regions of Quebec participated in a semi-structured interview. A thematic analysis of the transcribed interviews was performed. RESULTS: The findings highlighted the relevance and applicability of the framework to this specific HTA. According to interviewees, direct participation of users in the HTA process allows them to be part of the decision-making process. User consultation makes it possible to consider the views of a wide variety of people, such as marginalized and vulnerable groups, who do not necessarily meet the requirements for participating in HTA committees. However, some user representatives emphasized that user consultation should be integrated into a more holistic and participatory perspective. The most frequent barrier associated with user involvement in HTA was the top-down health system, which takes little account of the user's perspective. CONCLUSIONS: The proposed framework was seen as a reference tool for making practitioners and health managers aware of the different mechanisms of user involvement in HTA and providing a structured way to classify and describe strategies. However, there is a need for more concrete instruments to guide practice and support decision making on specific strategies for user involvement in HTA at the local level.

Secondary care clinic for chronic disease: protocol.

BACKGROUND: The complexity of chronic disease management activities and the associated financial burden have prompted the development of organizational models, based on the integration of care and services, which rely on primary care services. However, since the institutions providing these services are continually undergoing reorganization, the Centre hospitalier affilié universitaire de Québec wanted to innovate by adapting the Chronic Care Model to create a clinic for the integrated follow-up of chronic disease that relies on hospital-based specialty care. OBJECTIVE: The aim of the study is to follow the project in order to contribute to knowledge about the way in which professional and management practices are organized to ensure better care coordination and the successful integration of the various follow-ups implemented. METHODS: The research strategy adopted is based on the longitudinal comparative case study with embedded units of analysis. The case study uses a mixed research method. RESULTS: We are currently in the analysis phase of the project. The results will be available in 2015. CONCLUSIONS: The project's originality lies in its consideration of the macro, meso, and micro contexts structuring the creation of the clinic in order to ensure the integration process is successful and to allow a theoretical generalization of the reorganization of practices to be developed.

Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers, hospital managers and patients.

BACKGROUND: The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient's perspective is taken into consideration when such decisions are made. OBJECTIVE: To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level. METHOD: Data were collected using semi-structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives. RESULTS: Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them. DISCUSSION AND CONCLUSION: This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.

Alternatives to seclusion and restraint in psychiatry and in long-term care facilities for the elderly: perspectives of service users and family members.

BACKGROUND: There is growing interest in involving patients in decisions regarding healthcare technologies. This research project was conducted in collaboration with decision makers and health technology assessment agents in order to involve healthcare service users (and their loved ones) in the assessment of alternatives to seclusion and restraint in short-term psychiatric wards and long-term care facilities for the elderly. OBJECTIVE: This paper explores the viewpoints and suggestions of service users and service users' families about alternatives to restraint and seclusion, as well as conditions under which they could be used among adults in short-term psychiatric care and residents in long-term care facilities. METHODS: Using a semi-structured guide, we held eight focus groups: five with mental health service users and three with family members of elderly people in long-term care facilities. Focus group discussions were digitally recorded and transcribed verbatim, and we performed content analysis using NVivo 8 software. RESULTS: In both care environments, participants emphasized the importance of communicating with service users, as well as assessing their needs and their particular situation, for reducing the use of restraint and seclusion. A better welcome and accompaniment of people admitted for short-term psychiatric care emerged also as key approaches to reduce the use of restraint and seclusion. Long-term care facilities could also reduce the need for restraint and seclusion by creating a stimulating home environment and individualized occupational therapy programs. Participants in both groups suggested that caregivers other than healthcare staff could be more involved, especially peer-support workers in the case of psychiatric care and volunteers in the case of long-term care facilities. CONCLUSION: Participants suggested that changes were needed at a broader and more systemic level than simply replacing current measures of restraint and seclusion with alternative techniques. They favored an approach focused more on the person than on the techniques: they suggested that listening to and communicating with the service user could reduce the use of restraint and seclusion in both healthcare environments.

Involving patients in HTA activities at local level: a study protocol based on the collaboration between researchers and knowledge users.

BACKGROUND: The literature recognizes a need for greater patient involvement in health technology assessment (HTA), but few studies have been reported, especially at the local level. Following the decentralisation of HTA in Quebec, Canada, the last few years have seen the creation of HTA units in many Quebec university hospital centres. These units represent a unique opportunity for increased patient involvement in HTA at the local level. Our project will engage patients in an assessment being carried out by a local HTA team to assess alternatives to isolation and restraint for hospitalized or institutionalized adults. Our objectives are to: 1) validate a reference framework for exploring the relevance and applicability of various models of patient involvement in HTA, 2) implement strategies that involve patients (including close relatives and representatives) at different stages of the HTA process, 3) evaluate intervention processes, and 4) explore the impact of these interventions on a) the applicability and acceptability of recommendations arising from the assessment, b) patient satisfaction, and c) the sustainability of this approach in HTA. METHODS: For Objective 1, we will conduct individual interviews with various stakeholders affected by the use of alternatives to isolation and restraint for hospitalized or institutionalized adults. For Objective 2, we will implement three specific strategies for patient involvement in HTA: a) direct participation in the HTA process, b) consultation of patients or their close relatives through data collection, and c) patient involvement in the dissemination of HTA results. For Objectives 3 and 4, we will evaluate the intervention processes and the impact of patient involvement strategies on the recommendations arising from the HTA and the understanding of the ethical and social implications of the HTA. DISCUSSION: This project is likely to influence future HTA practices because it directly targets knowledge users' need for strategies that increase patient involvement in HTA. By documenting the processes and outcomes of these involvement strategies, the project will contribute to the knowledge base related to patient involvement in HTA.

[General practitioners in private practice in the city of Quebec and the application of population responsibility]. / Les médecins omnipraticiens de cabinet privé de la ville de Québec et l'application de la responsabilité populationnelle.

OBJECTIVES: The aim of this study is to examine the way in which general practitioners (GPs) in private practice view the idea of population responsibility, proposed by the Quebec Health and Social Services Ministry in 2004. We then look at how these views impact primary health care practice in Quebec City. METHOD: A qualitative exploratory approach was used; 18 semi-directed interviews were performed with private practice GPs, administrators and health professionals from community health and social services centres (CSSS). A content thematic analysis of the data was performed based on St-Pierre et al.'s model and grounded on Giddens' structuring theory. RESULTS: Because neither the population meant to be served nor the underlying responsibility are perceived the same way by the GPs and the CSSS health professionals, the respective practices do not always converge. Consequently, methods of communication, offers of services and management of resources impact on the operationalization of the concept of population responsibility, which has to be negotiated. DISCUSSION: In these negotiations, because physicians are the ones solicited by the other partners, the application of population responsibility increasingly becomes an opportunity to develop a medically oriented primary care organization.

Introducing patients' and the public's perspectives to health technology assessment: A systematic review of international experiences.

OBJECTIVES: The aim of this study was to review international experiences of patient or public involvement in the field of health technology assessment (HTA). METHODS: A systematic review of the scientific literature was conducted. A literature search was performed across nine databases. Other literature was identified through citation tracking, government websites (HTA agencies), and Internet search engines. Characteristics of the studies, description of the activities related to patient or public involvement, impact of these activities on the HTA process, and factors facilitating or limiting involvement were abstracted independently by two reviewers. RESULTS: A total of 1,441 potentially relevant papers were identified by the main search strategy. Among these, seventeen papers met the inclusion criteria; other search strategies identified seven additional documents. The findings reveal that patient or public involvement in HTA activities was reported in two domains, research and HTA process. In the research domain, patients are consulted to gather evidence about their perspectives, experiences, or preferences about a health technology. These perspectives could add key dimensions to the evaluation of health technologies that might otherwise be overlooked. In the domain of the HTA process, patients or public representatives participate in different stages of this process: prioritization, evidence assessment, or dissemination of findings. CONCLUSIONS: There are few published examples of experiences involving patients and the public in HTA. These examples show that patients' or the public's perspectives could add important dimensions to the evaluation of health technologies. However, there is a need to develop more systematic approaches to considering patients' and the public's perspectives in HTA.

Patients' perceptions of the quality of care after primary care reform: Family medicine groups in Quebec.

OBJECTIVE: To evaluate how a primary care reform, which aimed to promote interprofessional and interorganizational collaborative practices, affected patients' experiences of the core dimensions of primary care. DESIGN: Before-and-after comparison of patients' perceptions of care at the beginning of family medicine group (FMG) implementation (15 to 20 months after accreditation) and 18 months later. SETTING: Five FMGs in the province of Quebec from various settings and types of practice. PARTICIPANTS: A random sample of patients was selected in each FMG; a total of 1046 participants completed both the baseline and follow-up questionnaires. MAIN OUTCOME MEASURES: Patients' perceptions of relational and informational continuity, organizational and first-contact accessibility, attitude and efficiency of the clinic's personnel and waiting times (service responsiveness), physician-nurse and primary care physician-specialist coordination, and intra-FMG collaboration were assessed over the telephone, mostly using a modified version of the Primary Care Assessment Tool. Additional items covered patients' opinions about consulting nurses, patients' use of emergency services, and patients' recall of health promotion and preventive care received. RESULTS: A total of 1275 patients were interviewed at the study baseline, and 82% also completed the follow-up interviews after 18 months (n = 1046). Overall, perceptions of relational and informational continuity increased significantly (P < .05), whereas organizational and first-contact accessibility and service responsiveness did not change significantly. Perception of physician-nurse coordination remained unchanged, but perception of primary care physician-specialist coordination decreased significantly (P < .05). The proportion of participants reporting visits with nurses and reporting use of FMGs' emergency services increased significantly from baseline to follow-up (P < .05). CONCLUSION: This reorganization of primary care services resulted in considerable changes in care practices, which led to improvements in patients' experiences of the continuity of care but not to improvements in their experiences of the accessibility of care.

Introducing patient perspective in health technology assessment at the local level.

BACKGROUND: Recognizing the importance of increased patient participation in healthcare decisions leads decision makers to consider effective ways to incorporate patient perspectives in Health Technology Assessment (HTA) processes. The implementation of local health HTA units in university hospitals in Quebec provides a unique opportunity to foster an increased participation of patients in decisions regarding health technologies and clinical interventions. This project explores strategies that could be effective in involving patients in HTA activities at the local level. To do so, three objectives are pursued: 1) To synthesise international knowledge and experiences on patient and public involvement in HTA activities; 2) To explore the perceptions of stakeholders (administrators, clinical managers, healthcare professionals, HTA producers, and patients) regarding strategies for involving patients in various HTA activities; and 3) To produce a consensual strategic framework that could guide interventions for involving patients in HTA activities at the local level. METHODS: A systematic review of the literature will be conducted to synthesise international knowledge and experiments regarding the implication of patients and public in HTA. Then, focus groups will be carried out with representatives of various stakeholder groups in order to explore their perceptions regarding patient participation in HTA. Based on findings from the systematic review and the focus groups, a framework to support patient participation in HTA activities will be proposed. It will then be validated during a deliberative meeting with the research team, composed of scientists and decision makers, and representatives from different groups involved in HTA in Quebec. This deliberative meeting will aim at identifying the type and the degree of participation as well as the adequate timing for involving patients in local HTA activities. DISCUSSION: Given the actual state of evidence, integrating patient perspective in HTA activities has the potential to improve the quality of healthcare services. This study provides an opportunity to bridge the gap between HTA producers and its ultimate end-user: the patient. It will provide guidance to support local HTA units in Quebec and elsewhere in their decisions regarding patient participation. The framework developed could be applied to design and implement strategies for involving patients in HTA activities.

Organizing the public health-clinical health interface: theoretical bases.

This article addresses the issue of the interface between public health and clinical health within the context of the search for networking approaches geared to a more integrated delivery of health services. The articulation of an operative interface is complicated by the fact that the definition of networking modalities involves complex intra- and interdisciplinary and intra- and interorganizational systems across which a new transversal dynamics of intervention practices and exchanges between service structures must be established. A better understanding of the situation is reached by shedding light on the rationale underlying the organizational methods that form the bases of the interface between these two sectors of activity. The Quebec experience demonstrates that neither the structural-functionalist approach, which emphasizes remodelling establishment structures and functions as determinants of integration, nor the structural-constructivist approach, which prioritizes distinct fields of practice in public health and clinical health, adequately serves the purpose of networking and integration. Consequently, a theoretical reframing is imperative. In this regard, structuration theory, which fosters the simultaneous study of methods of inter-structure coordination and inter-actor cooperation, paves the way for a better understanding of the situation and, in turn, to the emergence of new integration possibilities.

[Continuity of cancer care in Quebec: beyond the symptoms]. / La continuité des soins oncologiques au Québec.

OBJECTIVE: Serious problems in the continuity of medical care provided to cancer patients are a frequent occurrence; the source of these problems is not well understood. The purpose of this research is to determine how these problems arise and how they are perpetuated. DESIGN: Qualitative descriptive study based on Anthony Giddens's theory of structuration. SETTING: Four teaching hospitals in the Quebec City region. PARTICIPANTS: Cancer patients (n = 62), family physicians (n = 14), and oncology specialists (n = 13). METHOD: Individual interviews were conducted with breast cancer and lung cancer patients. Their medical files were examined so that they could be ranked according to the stage of their disease. We also conducted individual interviews with a sampling of the patients' family physicians and oncology specialists at the hospitals participating in the study. An analysis of the content of the interviews was performed following the principles of grounded theory. MAIN FINDINGS: When conditions arise that are likely to lead to problems in the continuity of medical care, patients and physicians often try to compensate. Health care providers employ regulation strategies and patients and their families employ substitution strategies. Although these strategies generally get results, they constitute one-time actions by the physician or patient to circumvent a problem. And because they do not address the problem across the system, the source of the problem does not change. CONCLUSION: One of the unintentional consequences of the strategies used by clinicians and patients is the masking of the real issues involved in continuity of care; these strategies actually get in the way of in-depth changes based on the needs of the health care system as a whole.