Abstract from article: The Dutch healthcare system has changed towards a system of regulated competition to contain costs and to improve efficiency and quality of care. This paper provides: (1) a brief as-is overview of the changes for primary care, based on explorative literature reviews; (2) provides noteworthy remarks as for the way primary and secondary healthcare is organised; (3) an example of an E-health portal illustrating implemented processes within the Dutch context and (4) a proposed research agenda on various e-health topics. Noteworthy remarks are: (1) government, insurer, healthcare provider and patient are main actors within the Dutch healthcare system; (2) general practitioners (GP’s) are gatekeepers to secondary and other care providers; (3) the illustrated portal with a patient oriented design, provides access to applications implemented at care providers resulting in increased electronic availability and increased patient satisfaction; (4) a variety of fragmented information systems at health care providers exists, which leaves room for standardisation and increased efficiency. We end with suggestions for future research.
BACKGROUND: The quality standards of the Dutch Society of Intensive Care require monitoring of the satisfaction of patient's relatives with respect to care. Currently, no suitable instrument is available in the Netherlands to measure this. This study describes the development and psychometric evaluation of the questionnaire-based Consumer Quality Index 'Relatives in Intensive Care Unit' (CQI 'R-ICU'). The CQI 'R-ICU' measures the perceived quality of care from the perspective of patients' relatives, and identifies aspects of care that need improvement.METHODS: The CQI 'R-ICU' was developed using a mixed method design. Items were based on quality of care aspects from earlier studies and from focus group interviews with patients' relatives. The time period for the data collection of the psychometric evaluation was from October 2011 until July 2012. Relatives of adult intensive care patients in one university hospital and five general hospitals in the Netherlands were approached to participate. Psychometric evaluation included item analysis, inter-item analysis, and factor analysis.RESULTS: Twelve aspects were noted as being indicators of quality of care, and were subsequently selected for the questionnaire's vocabulary. The response rate of patients' relatives was 81% (n = 455). Quality of care was represented by two clusters, each showing a high reliability: 'Communication' (α = .80) and 'Participation' (α = .84). Relatives ranked the following aspects for quality of care as most important: no conflicting information, information from doctors and nurses is comprehensive, and health professionals take patients' relatives seriously. The least important care aspects were: need for contact with peers, nuisance, and contact with a spiritual counsellor. Aspects that needed the most urgent improvement (highest quality improvement scores) were: information about how relatives can contribute to the care of the patient, information about the use of meal-facilities in the hospital, and involvement in decision-making on the medical treatment of the patient.CONCLUSIONS: The CQI 'R-ICU' evaluates quality of care from the perspective of relatives of intensive care patients and provides practical information for quality assurance and improvement programs. The development and psychometric evaluation of the CQI 'R-ICU' led to a draft questionnaire, sufficient to justify further research into the reliability, validity, and the discriminative power of the questionnaire.
MULTIFILE
Introduction: The implementation of oncology care pathways that standardize organizational procedures has improved cancer care in recent years. However, the involvement of “authentic” patients and caregivers in quality improvement of these predetermined pathways is in its infancy, especially the scholarly reflection on this process. We, therefore, aim to explore the multidisciplinary challenges both in practice, when cancer patients, their caregivers, and a multidisciplinary team of professionals work together on quality improvement, as well as in our research team, in which a social scientist, health care professionals, health care researchers, and experience experts design a research project together. Methods and design: Experience-based co-design will be used to involve cancer patients and their caregivers in a qualitative research design. In-depth open discovery interviews with 12 colorectal cancer patients, 12 breast cancer patients, and seven patients with cancer-associated thrombosis and their caregivers, and focus group discussions with professionals from various disciplines will be conducted. During the subsequent prioritization events and various co-design quality improvement meetings, observational field notes will be made on the multidisciplinary challenges these participants face in the process of co-design, and evaluation interviews will be done afterwards. Similar data will be collected during the monthly meetings of our multidisciplinary research team. The data will be analyzed according to the constant comparative method. Discussion: This study may facilitate quality improvement programs in oncologic care pathways, by increasing our real-world knowledge about the challenges of involving “experience experts” together with a team of multidisciplinary professionals in the implementation process of quality improvement. Such co-creation might be challenging due to the traditional paternalistic relationship, actual disease-/treatment-related constraints, and a lack of shared language and culture between patients, caregivers, and professionals and between professionals from various disciplines. These challenges have to be met in order to establish equality, respect, team spirit, and eventual meaningful participation.