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Background: Children with medical complexity (CMC) are characterized by substantial family-identified service needs, chronic and severe conditions, functional limitations, and high health care use. Information exchange is critically important in high quality care of complex patients at high risk for poor care coordination. Written care plans for CMC are an excellent test case for how well information sharing is currently occurring. The purpose of this study was to identify the barriers to and facilitators of information sharing for CMC across providers, care settings, and families., Methods: A qualitative study design with data analysis informed by a grounded theory approach was utilized. Two independent coders conducted secondary analysis of interviews with parents of CMC and health care professionals involved in the care of CMC, collected from two studies of healthcare service delivery for this population. Additional interviews were conducted with privacy officers of associated organizations to supplement these data. Emerging themes related to barriers and facilitators to information sharing were identified by the two coders and the research team, and a theory of facilitators and barriers to information exchange evolved., Results: Barriers to information sharing were related to one of three major themes; 1) the lack of an integrated, accessible, secure platform on which summative health care information is stored, 2) fragmentation of the current health system, and 3) the lack of consistent policies, standards, and organizational priorities across organizations for information sharing. Facilitators of information sharing were related to improving accessibility to a common document, expanding the use of technology, and improving upon a structured communication plan., Conclusions: Findings informed a model of how various barriers to information sharing interact to prevent optimal information sharing both within and across organizations and how the use of technology to improve communication and access to information can act as a solution.

Le système d'assurance médicaments du Canada est l'un des plus coûteux au monde, mais des millions de Canadiens peinent pourtant à accéder aux médicaments dont ils ont besoin. C'est pourquoi les gouvernements fédéral, provinciaux et territoriaux envisagent des propositions de polices d'assurance médicaments publiques pour tous les Canadiens. Les polices d'assurance médicaments permettent de prioriser les enfants et les adolescents, dont les besoins pharmacologiques particuliers ont longtemps été négligés. La prise de médicaments sur ordonnance est courante au sein de cette population, puisqu'environ la moitié des enfants et des adolescents canadiens ont besoin d'au moins une ordonnance au cours d'une année donnée. La prise de médicaments demeure toutefois concentrée au sein des populations atteintes de maladies complexes, chroniques ou graves. Les enfants et les adolescents recourent largement aux préparations magistrales et aux médicaments dans un emploi non conforme à l'étiquette, ce qui a une incidence sur l'innocuité, l'efficacité, la palatabilité et les coûts. Les organes décisionnels en matière de remboursement n'accordent pas toute l'importance qu'ils devraient aux avantages uniques des médicaments pédiatriques, ce qui inclut les formulations adaptées à la pédiatrie, une meilleure qualité de vie pour les enfants et les familles et les économies à l'extérieur du système de santé. Quel que soit le modèle d'assurance médicaments finalement adopté, il est essentiel d'offrir une couverture d'assurance médicaments sur ordonnance complète, universelle et transférable pour tous les enfants et les adolescents. C'est pourquoi les experts des médicaments pédiatriques doivent créer un formulaire national de médicaments pédiatriques fondé sur des données probantes. Santé Canada doit également améliorer les processus pour que les formulations et médicaments commerciaux adaptés à la pédiatrie deviennent plus disponibles et accessibles. À cette fin, le gouvernement fédéral doit également soutenir la recherche-développement des médicaments pédiatriques. [ABSTRACT FROM AUTHOR]

Canada's drug insurance system is one of the most expensive in the world, yet millions of Canadians still struggle to access necessary medications. As a result, provincial, territorial, and federal governments are considering public pharmacare policy proposals to ensure that all Canadians can access the medications they need. Pharmacare policies offer an opportunity to prioritize children and youth, whose unique drug needs have long been neglected. Prescription drug use is common in this population, with approximately half of Canadian children and youth requiring at least one prescription in any given year. Drug use remains concentrated, however, among those with complex, chronic, and serious diseases. Children and youth rely heavily on compounded and off-label prescription drugs, which impacts safety, efficacy, palatability, and cost. Reimbursement decision-making bodies do not appropriately value the unique benefits of paediatric drugs, including child-friendly formulations, improved quality of life for children and families, and cost-savings outside the healthcare system. Regardless of the pharmacare model ultimately implemented, ensuring universal, comprehensive, and portable prescription drug coverage for all children and youth is essential. To accomplish this, paediatric drug experts should develop a national, evidence-informed formulary of paediatric drugs. Health Canada should also improve processes to make commercial paediatric drugs and child-friendly formulations more available and accessible. The federal government must also support paediatric drug research and development to this end. [ABSTRACT FROM AUTHOR]