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3.1 - Patient Identification

A patientId may be provided when registering a new patient.  Upon registration, a wmdaId will be assigned and returned.  The wmdaId itself is guaranteed to be globally unique, though it cannot guarantee that the patient is not identified with another wmdaId.  The wmdaId must be used to identify the patient in all calls to the Search, Match & Connect (SMC) service after the initial patient registration.

 

Patient Identifiers

IdentifierDescription
patientId
  • Provided by the local registry system.  
  • Should be worldwide unique.
    • Should follow the construct of hub code + local patient id. 
      • The hub code should be the two-character ISO country code of the registry (e.g. DE for Germany)  
        • In the case of multiple registries in one country, a replacement code will be assigned.
  • Should be provided as a user-friendly (displayable) id for use on screens and on documentation.
wmdaId
  • Generated by the central (SMC) system.
  • Must be unique.
  • Must be used for all system-to-system patient identification after the initial patient registration.
  • Should be displayed on screens and on documentation.

3.2 - Create Patient (Send Patient)


The CreatePatientRequest is used to submit a patient to the Search & Match Service.  This call returns a wmdaId for the patient.


CreatePatientRequest (/api/v2/patients)

3.3 - Update Patient

The UpdatePatientRequest is used to update a patient with the Search & Match Service.

UpdatePatientRequest (/api/v2/patients)

3.4 - Register Patient   

The registerPatientRequest is used to register a patient with a partner registry.  This message accompanies all requests.

Entire payload may be sent by the sending registry.  The central hub can review the contents and update any relevant values that are (already) stored in the Search & Match system.  The response of the api will provide results (fields / values) of the updates made.

RegisterPatientRequest

Same payload as UpdatePatientRequest (/api/v2/patients).  Additional fields to be considered:

Patient IdentifierpatientId

string

nullable:  false

Sending RegistryregSend

string

nullable: false

Receiving RegistryregReceive

string

nullable: false

Patient First NamefirstName

string

nullable: true

Patient Last NamelastName

string

nullable: true

3.5 - Update Registered Patient    

The updateRegisteredPatientRequest is used to update a registered patient with a partner registry.

UpdateRegisteredPatientRequest

Same payload as RegisterPatientRequest.  Empty / blank fields in the payload will mean deletion.  Missing fields will have no effect.

3.6 - Update Patient Status 

UpdatePatientStatusRequest

The updatePatientStatusRequest is used to communicate changes in patient status.

Statuses permitted in EMDIS are PRE, ACT, SUS, STP.  PRE / ACT may have some relevance to Search & Match Service.  SUS / STP may have relevance to Search, Match & Connect.


From EMDIS semantics:

"After the status has been set to suspended (SUS), the transplant centre is fully responsible for pending requests. If a transplant centre is no longer interested in a certain pending request, the request has to be cancelled by the transplant centre by means of a REQ_CAN message. If the transplant centre does not explicitly cancel a pending request, the request will be processed normally by the requested hub.

After the status has been set to stopped (STP), all pending requests but WOR_REQ are cancelled automatically at the remote hub. In this case, no REQ_CAN messages have to be sent by the transplant centre. The only way to reactivate the patient is a PAT_UPD / PAT_STAT message pair. The PAT_UPD is necessary since it cannot be guaranteed that the patient information is still stored at the remote hub. It is up to each hub how long patient information is retained after the search was stopped.

However, it makes no sense to delete a patient who is in workup. Patient searches are sometimes not stopped at remote hubs although the search is not really active any more. This wastes time for matching and gives bad statistics about search length and search counts.

All hubs are strongly encouraged to monitor their international searches closely and stop or suspend them if not longer needed. The searched hub is allowed to send reminder faxes with patients without activities to the patient’s hub."

Fields for consideration:

Sending RegistryregSend

string

nullable: false

Receiving RegistryregReceive

string

nullable: false

WMDA Patient IdentifierwmdaId

integer

nullable: false

Old Patient StatepriorStat

string

nullable: true

New Patient StatenewStat

string

nullable: false

Reason For Changereason

string

nullable: true

3.7 - Request More Patient Info 

Allows a donor registry to request more details about a patient from the patient registry, e.g. if that extra information is needed in a VT or later maybe a WU request.  Locally developed and managed national rules should indicate which PII is required at which stage of the process.

If a request is received where patient information is expected, but missing: Acknowledge received message and respond with warning that search is on hold until missing info is received, perhaps with reference to national rules.

TODO:  Design message flow & elaborate semantic detail.





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