Table 4 Taxonomy of care coordination for rare conditions
Domain | Sub-domain | Options | Examples |
|---|---|---|---|
1. Ways of organising care | Local | Local care delivery | All care delivered locally—in one place, or multiple places—including hospital and home visits, emergency care |
Local care coordination | All coordination delivered locally—e.g. coordination appointments local to the patient | ||
Hybrid (combination of specialist and local) (e.g. hub and spoke models) | Coordination nationally centralised but delivered locally | Specialist service coordinating care but care delivery is done locally (e.g. at local hospital or GP) | |
Care nationally centralised but delivered locally | Care nationally centralised with outreach, specialist providers with routine care from local providers | ||
Types of outreach models | Outreach support for professionals, outreach clinics, outreach care coordination, outreach education | ||
Regionally centralised care | Regional network models, regionally delivered services | ||
Nationally centralised | Care delivered and coordinated centrally | Specialist centre, rare disease centre or service | |
Care delivered centrally (in one nationally commissioned service or centre) | Nationally commissioned service or rare disease centres, adult and paediatric centres or condition specific centres | ||
Care delivered centrally in multiple services/centres or as part of a network | National network models to deliver care and coordination and share expertise, nationally commissioned services | ||
2. Ways of organising those involved in a patient’s care (including professionals, patient and/or carer) | Lack of collaborative working between professionals involved in a patient’s care | Professionals not working together (health care, social care, third sector if appropriate, etc.) | Lack of multidisciplinary team (MDT) working, lack of collaborative working |
Collaboration between some of the professionals involved in a patient’s care | Some professionals working together to provide care (health care, social care, third sector if appropriate, etc.) | Joint clinics with specialist and local providers or adult and paediatric providers | |
Continuity of professionals | Same professionals throughout care, professionals attending appointments with patients | ||
Collaboration between many or all professionals involved in a patient’s care | All professionals working together to provide care (health care, social care, third sector if appropriate, etc.) | Condition specific clinics—run by health care professionals, within specialist service, one stop shop, carousel clinic | |
All professionals meeting together to discuss care (health care, social care, etc.) | MDT meeting, or health care professionals attending Education, Health and Care Plan meetings | ||
Lack of collaborative working between professionals and patients/carers | Professionals not working with patients | Lack of collaboration with patients (e.g. lack of involvement in MDT meetings) | |
Collaboration between some professionals and patients/carers | Professionals working with patients to prepare them | Orientation visits/transition events/advice and support | |
Patients meeting to discuss care | Â | ||
Collaboration between many or all professionals involved in a patient’s care and the patient/carer | Professionals meeting together with patient/carer (health care, social care, third sector if appropriate etc.) | Patient involvement in MDT meeting where appropriate | |
3. Responsibilities | Administrative support | Administrator | A combination of an administrator and the patient and carer (e.g. working together to arrange appointments) An administrator/service PA or secretary (e.g. to produce letters and plans, take calls, organise clinics, act as the first point of contact for patients and update GPs), Rare disease charities (e.g. to provide administrative support, support with travel arrangements and answering queries) Automated support (e.g. a hospital appointment system) |
Point of contact for patients | Clinicians (e.g., consultants, nurses, community matrons, coordinators, geneticists, medical social workers, or disability nurses) Administrators (e.g. secretaries) Charity workers (e.g. charity patient support workers) and youth workers | ||
Point of contact for professionals (health care, social care, etc.) | Coordinator, specialist | ||
Formal roles/responsibilities | Administrative coordinator | Clinic coordinator—could be range of roles, including patient/carer, non-medical professional, charity employed support worker, nurse or allied health professional equivalent | |
Care coordinator | Someone with system and condition knowledge such as a nurse or allied health professional equivalent or hospice/community nurse / social care professional / non-medical professional / charity employed support worker / transition coordinator / doctor equivalent role | ||
Clinical coordinator | Someone with sufficient clinical expertise to coordinate complexity—doctor equivalent role, GP | ||
Clinical lead | Someone with oversight over care such as a nurse, doctor equivalent role, GP | ||
GP | Coordination, and implementing care plans from specialist | ||
Charities / patient support networks (in some situations) | Direct roles in coordination (e.g., clinic coordinators/coordinating care), supporting coordination and advocating on patients’ behalf | ||
Supportive roles | Charities / patient support networks | Direct roles in coordination (e.g., clinic coordinators/coordinating care), supporting coordination and advocating on patients’ behalf | |
Patients and carers | Direct role as coordinators, providing education to professionals, part of the MDT and information provision | ||
Peers | Providing support for coordination | ||
No responsibility | No point of contact / coordinator / clinical lead / GP / no hospital ownership | Â | |
4. How often care appointments and coordination appointments take place | Regular | Care appointments | Ranging from multiple times per week—weekly—every 3 months—every 6 months—annually |
Coordination appointments | Ranging from more than once a month—monthly—every 2 months—every 6 months—annually | ||
Meetings | Ranging from before every clinic—weekly—twice a month—monthly—every 3 or 4 months –every 6 months- annually | ||
On demand—when needed | Care appointments | On demand care appointments, coordination or specialist centre appointments when needed | |
Hybrid (combination of regular and on demand) | Regular appointments (as above) with on demand in between as and when needed | Regular appointments but with on demand appointments (care appointments, coordination appointments or specialist centre appointments) as and when needed | |
5. Access to records | Full access | Health care professionals | Health care professionals having full access to records |
Patients and/or carers | Patients and/or carers having full access to records | ||
Filtered access (information filtered to necessary information that is needed by the relevant individuals) | Health care professionals | Health care professionals having access to the relevant necessary information that is needed | |
Patients | Patients and/or carers having access to the relevant necessary information that is needed | ||
Third sector (where deemed necessary) | Charity organisations having access to relevant necessary information if needed (e.g., when involved in care delivery/coordination) | ||
6. Modea of contact | Digital | Information sharing | Digital records, digital letters, digital databases and registries, digital portals, mobile applications for patients and digital patient information |
Coordinated care delivery | Video appointments with professionals, virtual MDT clinics, digital ways of tracking symptoms e.g., electronic wearable devices, virtual tours of wards, apps to record test results, diagnostic technology, virtual centres | ||
Coordination | Video appointments with coordinator, coordination in the cloud, virtual review (as lowest level of coordination) | ||
Communication (between professionals) | Virtual panels to discuss cases with experts, email hotlines, virtual MDT meetings and clinics, email contact | ||
Communication (between professionals, patients and carers) | Email contact | ||
Face-to-face | Coordinated care delivery | Initial meetings, key treatment phases such as diagnosis and stabilisation, physical exams, clinic appointments, home appointments | |
Coordination | Face-to-face meetings between patients and coordinator | ||
Communication (between professionals) | Face-to-face team meetings | ||
Information sharing | Via coordinator and meetings | ||
Telephone | Coordinated care delivery | Telephone clinics and consultations, conference calls, appointments such as GP appointments, telephone calls when needed, discharge calls and follow-up appointments | |
Coordination | Telephone calls with coordinators, initial introductions, coordination of care via phone, NHS 111 style phone service to coordinate care for rare conditions, WhatsApp contact with coordinator | ||
Communication (between professionals) | Phone calls with other professionals, contacting specialists, professional conference calls, discussing treatment plans, asking local teams to implement care plans | ||
Communication (between professionals and patients/carers) | Telephone advice services or direct line to team, regular check-ups, phoning departments, WhatsApp contact, phone calls between patient and professionals, messaging peers | ||
Written | Information sharing—care documentation | Written records such as condition specific passports and alert cards Written letters such as clinic letters, discharge letters and summary letters Care plans for patients such as agreed care plans, shared care protocols, Education Health Care Plans, transition plans Reports such as written reports and handover packs and transition reports and booklets and Summary of records | |
Information sharing—service planning | Plans to specify hospital and health care professional roles and responsibilities Standard operating procedures to record MDT working | ||
Information sharing—guidelines and care pathways | Service specifications Quality assurance standards Governance frameworks National guidelines such as NICE, charity produced, or specialist service produced International best practice Lack of evidence-based pathways For coordinators | ||
Information sharing—training policies and frameworks | For coordinators, supervisors | ||
Lack of (communication mode) | Information sharing | Lack of letters, care plans | |
Communication | Between professionals or professionals and patients |