Western Norway Regional Health Authority

Abstract Background: Integrated care fundamentally depends on timely awareness and access to distributed patient records. However, patients with multimorbidity navigate complex, circular pathways, creating information fragmentation that compromises safety and efficiency. Current Health Information Systems often lack robust frameworks for inter-organizational Data Management (DM). This study aims to design a conceptual information architecture framework to resolve systemic gaps in awareness, access, and the integration of the patient’s voice. Methods: Applying Design Science Research (DSR), this study synthesizes rigor from a scoping review with relevance from a longitudinal analysis of 14 multimorbid patients (1954–2024). A representative 19-year user scenario was validated by clinical expertise, and along with root-cause and stakeholder analysis, systemic failures in information logistics were explicated. High-level functional and non-functional requirements were iteratively derived, foregrounding Information Governance (IG), DM, and Security and Privacy as essential constraints. Results: The resulting artifact is a prescriptive information-centric architecture framework (meta-artifact). The layered, modular design decouples metadata, clinical codes, and location pointers into lightweight information tokens, enabling a paradigm shift from physical record replication to governed virtual access. This structure separates concerns across user interaction, pathway logic, and secure storage, providing the structural flexibility required for complex inter-organizational DM. Critically, Health Information Quality (HIQ) is positioned as the functional mechanism to operationalize DM, enforcing structural imperatives (R6–R7) for data accuracy, currency, and contextual relevance. These mechanisms directly mitigate empirically identified failures such as data duplication (F1, F2) and coordination delays (F4). Conceptual feasibility was demonstrated through an acute care transition and discharge use case. Conclusions: This study contributes reusable prescriptive design knowledge, validating the utility of architectural frameworks in solving socio-technical information logistics problems. By embedding Security and Privacy, and IG and DM as authoritative vertical pillars, and operationalizing DM through HIQ, the architecture facilitates high-quality information assets to support inter-organizational information logistics, data-driven opportunities, proactive awareness, and on-demand virtual access, while sustaining interprofessional trust and collaboration. The standards- and vendor-neutral design ensures international relevance and accommodates emerging technologies, such as blockchain and AI. This framework provides a verifiable blueprint in which clinical reasoning and patient-centric pathways guide information logistics.

The Valkyrie project aims to develop a demonstration Federated Electronic Health Record for the use of mental health practitioners in Norway. Information for the record is drawn from existing records in Source Systems operating across primary and secondary care. Recording of information in any such system, in response to a healthcare event, triggers the generation of an Encrypted Token, containing summary metadata about the event, clinical coding indicating its clinical context and a locator that can be used to retrieve the full record of the event from the original Source System. The Valkyrie architecture consists of a number of interlinked Security Domains, each with its own private and public keys, through which the Encrypted Tokens are passed. Each Security Domain performs a specific function on a set of Tokens and only has access to the information within each Token that is necessary to perform that function. This paper describes the structure of the Encrypted Token, the function of each Security Domain and the orchestration of the flow of Tokens through the Domains. Together this allows a user to run a Valkyrie Session, in which they can view the content of a patient record, where all content has been drawn in real-time from heterogenous Source Systems (ISO13606- and openEHR-based) and is destroyed when the session terminates.

Rationale: Dysphagia in older adults treated in rehabilitation units is associated with malnutrition, which may jeopardize the recovery. We therefore aimed to study the prevalence, and the relationship between dysphagia and unintentional weight loss in a rehabilitation unit. Secondary aim was to identify how many were nutritionally assessed using the national nutrition evaluation tool (EVS) advocated in Danish primary care, which is supposed to be performed within 24 hours after admission to a care unit. Methods: Data was collected consecutively over a 5 months period in 2022. All patients >65 yrs who stayed ≥ of 7 days were registered. Dysphagia and weight loss ≥1 kg in the last month were identified from medical records and the municipality record system (Cura). Results: In total 298 patients were included; i.e. 58% women, mean age 81.4 yrs, 16% (n=49) had dysphagia and 49% had an unintentional weight loss. Two thirds (n=32) of those with dysphagia suffered from weight loss, and showed BMI 20.8 vs 24.5 for the rest of the group (p≤0.01). The mean age of those with dysphagia and weight loss was 84.4 yrs vs 81.1 for the rest of the group (p=0.014). 26% (n=13) of those with dysphagia came from neurological departments and 18% (n=9) from geriatric departments. 90% of those with dysphagia received texture modified food and 10% were exclusively nourished via tube feeding. Only 13% of the total group were nutritionally assessed by the evaluation tool EVS. Conclusion: Dysphagia and unintentional weight loss was common in the rehabilitation unit. Two thirds of those with dysphagia had recent weight loss and were older. All those with dysphagia received adapted nutritional treatment. A majority of those with dysphagia and weight loss came from neurological- or geriatric departments. The recommended national nutrition evaluation tool (EVS) was used in a minor part of the patients. Disclosure of Interest: None declared

Abstract BackgroundThe mechanisms by which GBA and APOE mutations result in PD or DLB are not fully understood, however there is evidence that it may be connected to reduced levels of GCase enzyme activity. CNS penetration has been confirmed for Ambroxol, and has been shown to increase glucocerebrosidase activity and protein levels in animal and human studies. One small open study with Ambroxol 420mg TID in PD for 186 days found excellent target engagement and improved motor symptoms, and a RCT with 50 PDD patients is ongoing in London, Canada.MethodWe will execute a national multicenter phase III RCT clinical intervention study with Ambroxol in prodromal and mild DLB in Memory Clinics in Norway. We will include persons living with prodromal (DLB‐MCI) or mild DLB with MMSE >=15 to Ambroxol or placebo. We will stratify participants based on genotypes for APOE and GBA and the CSF biomarkers A‐beta, total and phosphorylated tau protein. We will build a national trial platform for drug trials in neurodegenerative disorders in Norway and aim to include more centers in Europe for next phase studies via the European DLB Consortium (E‐DLB). We will execute a PPI program to raise awareness and reduce stigma for people living with DLB and their families.ResultThe ANeED‐study has received funding from the national Norwegian health authorities. Formal approvals for ethics, data protection and Medicine Agency are ongoing. We are planning a national start‐up meeting in Norway in September 2020, and we are currently building a national platform in Norway to be able to run clinical intervention studies in neurodegenerative disorders. We are building a PPI program to recruit patients and caregivers to clinical studies.ConclusionPhase III studies with Ambroxol in PD, PDD and DLB are currently being planned. APOE, GBA and GCase are central to the disease process in both PD, PDD and in DLB. Patients, carers and health providers now need to be offered participation in clinical studies also when diagnosed with one of the α‐synucleinopathies. Preliminary data find Ambroxol to be potentially disease modifying in these disorders.

To prevent the 2.6 million newborn deaths occurring worldwide every year, health system improvements and changes in care-taker behaviour are necessary. Mothers are commonly assumed to be of particular importance in care-seeking for ill babies; however, few studies have investigated their participation in these processes. This study explores mothers' roles in decision making and strategies in care-seeking for newborns falling ill in Ethiopia. A qualitative study was conducted in Butajira, Ethiopia. Data were collected during the autumn of 2015 and comprised 41 interviews and seven focus group discussions. Participants included primary care-takers who had experienced recent newborn illness or death, health care workers and community members. Data were analysed using thematic analysis. Choices about whether, where and how to seek care for ill newborns were made through cooperation and negotiation among household members. Mothers were considered the ones that initially identified or recognised illness, but their actual opportunities to seek care were bounded by structural and cultural constraints. Mothers' limited bargaining power, contained by financial resources and gendered decision making, shaped their roles in care-seeking. We identified three strategies mothers took on in decision making for newborn illness: (a) acceptance and adaptation (to the lack of options), (b) negotiation and avoidance of advice from others, and (c) active care-seeking and opposition against the husband's or community's advice. While the literature on newborn health and parenting emphasizes the key role of mothers in care-seeking, their actual opportunities to seek care are shaped by factors commonly beyond their control. Efforts to promote care-seeking for ill children should recognise that mothers' capabilities to make decisions are embedded in gendered social processes and financial power structures. Thus, policies should not only target individual mothers, but the wider decision making group, including the head of households and extended family.

While shared decision-making (SDM) training programmes for health professionals have been developed in several countries, few have been evaluated. In Norway, a comprehensive curriculum, "klar for samvalg" (ready for SDM), for interprofessional health-care teams was created using generic didactic methods and guidance to tailor training to various contexts. The programmes adapted didactic methods from an evidence-based German training programmes (doktormitSDM). The overall aim was to evaluate two particular SDM modules on facilitating SDM implementation into clinical practice. A descriptive mixed methods study using questionnaires and a focus group guided by the Medical Research Council Complex Interventions Framework. The training was provided as two different applications (module AB [introduction and SDM-basics] and module ABC [introduction, SDM-basics and interactive training]) with differing learning objectives, extent of interactivity, and duration (1 vs 2 hours). Groups of participants were recruited consecutively based on requests for health professional SDM training in university/college- and hospital-settings. By a focus group and a self-administered questionnaire comprehensibility, relevance and acceptance were assessed and qualitative feedback collected after the training. Data passed descriptive and content analysis, respectively. Knowledge was assessed twice using five multiple-choice items and analysed using paired t-tests. In 11 (six AB and five ABC) training sessions, 357/429 (296 AB and 133 ABC) eligible nurses, physicians and health professional students with varying clinical backgrounds and previous levels of SDM-knowledge participated. SDM-knowledge increased from 25-78% (range pretest) to 85-95% (range post-test) (P ≤ .001). The training was rated easy to understand, acceptable and relevant for practice. Findings to improve the education suggest higher emphasis on interprofessional teaching methods. The two SDM training modules met the basic requirements for use in a broader SDM implementation strategy and can even improve knowledge.

I denne boka drøfter forfatterne ulike utfordringer og løsninger knyttet til samordning av helse- og velferdstjenestene. Samordning er sentralt for å skape et helhetlig helse- og velferdstilbud til både eldre og yngre brukere med komplekse behov. For å forstå hvilke utfordringer og muligheter som finnes, trenger man kunnskap om organisasjon og organisatorisk kontekst. Boken inntar et organisasjonsperspektiv hvor mønstre og forklaringer søkes i formelle og uformelle strukturer, prosesser og organisasjonskulturer.Brukernes behov for tjenester går ofte på tvers av organisasjoners og profesjoners etablerte grenser. Forfatterne belyser muligheter og begrensninger ved noen utvalgte løsninger som skal bidra til å overskride eller bryte ned slike grenser. Eksempler på slike løsninger er brukermedvirkning, tverrfaglig samarbeid, teamorganisering, koordinator, standardisering og behandlingslinjer, digitalisering samt beslutningsverktøy for tidlig innsats blant barn og unge (BTI). Et bidrag sammenfatter ulike forskningstilnærminger for å analysere samordning og samarbeid. Målgruppen for boken er forskere, universitets- og høyskoleansatte, studenter og ansatte, særlig innenfor helse- og velferdssektoren. Den kan også være interessant og nyttig for brukerorganisasjoner og faglige og administrative beslutningstakere i offentlig og privat virksomhet. Summary: The book discusses various challenges and solutions related to the coordination of health and welfare services. Coordination is central to creating integrated services for users with complex needs. In order to understand the challenges and opportunities associated with creating such services, one needs knowledge related to organizations and the organizational context. The book's chapters takes on an organizational perspective where patterns and explanations are sought in formal and informal structures, processes and culture. The users’ need for services often cross established boundaries, both organizational and professional. The authors highlight the possibilities and limitations of some selected solutions that will help to cut across or break down such boundaries. Examples of such solutions are user involvement, interdisciplinary collaboration, team organizations, coordinators, standardization and patient pathways, digitization and decision-making tools for employees who work in the services. One chapter summarizes three different theoretical research approaches for analyzing coordination and collaboration. The target group is researchers, university and college employees and students of the health and welfare sector. The book also will be of interest for user organizations as well as administrative and professional decision-makers in public and private businesses.

Brukermedvirkning er i dag et sentralt prinsipp i helse- og velferdssektoren. Noen ganger er tjenestene imidlertid organisert slik at dette er vanskelig å ivareta. I dette kapitlet ses det nærmere på hvordan organisering av beslutningsprosessene kan skape utfordringer for brukermedvirkningen. Det diskuteres hvordan brukermedvirkning kan forstås og analyseres. Ved hjelp av blant annet beslutningsteori og eksempler fra forskning trekkes det frem en del organisatoriske utfordringer for brukermedvirkning og hvordan disse kan løses. Kapitlet avsluttes derfor med en oppfordring til å være bevisst på at brukermedvirkningen må sikres ved at tjenesteyterne aktivt engasjerer seg for å legge til rette for at brukerne kan delta i beslutningsprosessene og fremme sine interesser.