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Table 1 Key definitions of care coordination areas included in survey

From: Experiences of coordinated care for people in the UK affected by rare diseases: cross-sectional survey of patients, carers, and healthcare professionals

Area of care coordination

Definition

Care coordinator

‘A professional with a recognised role in helping patients and carers manage a range of needs between different professionals or across care settings. They may be a full-time coordinator or may coordinate care as part of their main job, such as a GP’

Specialist centre

‘A centralised facility that enables patients to see a number of healthcare professionals in one visit. Usually, the professionals at specialist centres will be experts in rare and undiagnosed conditions. Non-healthcare professionals may also see patients at the same centre’

Care plan

'A paper or electronic document which describes the health services and support that are needed and should be agreed between patients, carers and professionals. The care plan may be a single document or it may be part of another record which includes non-health services such as an Education, Health and Care Plan (EHCP)’