Short summary

People with intersectoral or cross-specialty care needs are at high risk of insufficient and fragmented care if their care is not coordinated. This project aims to develop a model for care coordination in complex pathways for vulnerable persons with many care needs. The project consists of a literature review, an observation study in 5 primary and secondary care settings, and a workshop with participation of patient/client and health care and social care professionals.

Rationale

Coordination of intersectoral care is crucial when providing care for vulnerable persons with multiple care needs because solving complex health and social problems is beyond the capacity of any one sector alone. Intersectoral care coordination includes both coordination within different silos in the healthcare sector (primary, secondary and tertiary healthcare) and between health and non-health sectors, as well as between sectors (health care and social care). The purpose of care coordination across specialties and sectors is to improve health outcomes through "deliberate action to facilitate the appropriate delivery of [...] care services [...] ". Coordination of care is described as a mean to obtain continuity in care and has become a central part of guidelines and healthcare delivery policies. However, in practice coordination of care is difficult to implement mainly for two reasons.

First, the number of people with multi-morbidity, chronic, and psychosocial conditions is increasing. From a professional perspective, more people with a high degree of accumulated conditions leads to an increase in the directly patient-centered or client-centered coordinating work. This puts pressure on a care system, which already suffers from scarcity of resources. From a patient/client perspective, the more simultaneous problems one have the more vulnerable one gets. Both vulnerability and pathway complexity makes it difficult to manage and coordinate one's own pathway.

Second, care coordination also includes coordination without direct involvement of patients/clients. This coordination is not supported by the current incentive structure of care systems. Coordination thus becomes tacit, individually performed tasks, which are hard to facilitate. Further, coordination without patient/client contact can be very burdensome which is a barrier for ongoing coordination is. This type of coordination, however, is crucial because linkage of professional expertise affects the mutual understanding of the patient's /client's care need and hereof facilitation of appropriate delivery of care services.

The literature on care coordination has mainly focused on describing barriers to continuity of care delimited to specific populations (breast cancer patients, diabetic patients, or fragile elderly) or in specific care settings (primary care/GP, specific hospital units, or mental health services). Descriptions of facilitators to continuity of care - the actual care coordination activities - in cross-specialty and intersectoral care is unsystematically reported in the literature. As a result, it is unclear which activities that needs to be performed in order to coordinate intersectoral care in general. Further, lack of systematic descriptions of intersectoral care coordination action leads to a low transferability of knowledge about coordination between different settings and diagnoses even though there seems to be potential for describing cross-cutting key coordination activities which could be beneficial for both research and practice.

In sum, further research is needed about how to coordinate intersectoral care for persons with multifaceted care needs. Especially information from practice about concrete coordination activities should be further investigated to form a basis for further development of the field.

This study aims to explore the practice of intersectoral pathways for vulnerable persons. In particular, the study objective is to explore what facilitate coordination and continuity and how such facilitating factors can be applied into a general model of care.

The research questions are: *Which coordination is important in intersectoral or cross-specialty pathways for vulnerable persons? *How is coordination in everyday life created in organizations that provide care for vulnerable persons? *How can vulnerable persons be involved in their own pathway? *Which resources and which barriers exist in intersectoral or cross-specialty pathways for vulnerable persons and how are they characterized? *How do revealing and differentiating clinical and organizational complexity affect continuity of care? *Which role does coordination of pathways play to equity in health?

Description of the cohort

In order to study care coordination outside the diagnose-box, two very different groups with intersectoral or cross-specialty care needs are chosen to represent the groups of this project's interest. Children and adolescents with mental health problems and migrant patients with complex care needs have multifaceted treatment and care needs and are different in almost all other aspects. These patients'/clients' pathways are chosen for investigation. The project are interested in the pathway which have several stakeholders. The stakeholders are the patient/client, their relatives, the health care and social care professionals and administrators who will all be asked to participate as informants. Patients/clients and their relatives will be included if they have intersectoral/cross-specialty care needs. They will be excluded if they rejection participation or are unable to give or understand informed consent (for underaged persons (under 18) this regard their guardian). Recruitment takes place in the observation study.

Professionals will be recruited before observations are made and collaboration agreement will be etablished before observation. Observation, and recruitment, will take place in The Migrant Clinic, Odense University Hospital (OUH), Child and Adolescent Psychiatry, Odense (patients aged 0-19), and Centre for Survivors of Torture and Trauma, Odense/Vejle, Lægerne Christiansgade (general practice) Odense, and Odense Municipality's JobCenter. Observation in each unit takes place in 14 days.

The project aims at including 20 professionals, 15 patients/clients, 5 relatives, and 5 administrative staff (N=45).

Data and biological material

The project data consist qualitative data such as written journal material (not from patients' electronic record) , sound recorded interviews, video and photos from observations, and ethnographic field notes.

Collaborating researchers and departments

The Migrant Clinic, Department of Infectious Disease, Odense University Hospital

• Morten Sodemann, professor and chief physician

Center for Survivors of Torture and Trauma, Odense/Vejle, Mental Health Services

• Louise Schwartz, head of department
• Stine Bjerrum Møller, head of research

Odense JobCenter, Job and Development 3, Odense Municipality

• Ida Nørbygaard, head of department

Lægerne Christiansgade

• Stine Pugdahl Hansen, general practitioner, head of clinic
• Lukasz Kamionka, general practitioner, head of clinic

Child and Adolescent Mental Health Services, Odense

• Niels Bilenberg, professor,chief physician, head of research