{ "resourceType": "StructureDefinition", "id": "profile-patient", "text": { "status": "generated", "div": "
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RareCare_Patient Profile

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This profile defines constraints on the Patient resource for use within the RareCare World rare disease data exchange framework. \r\n It ensures a consistent representation of patient demographic and administrative data across healthcare systems.

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Key Features

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Not Supported in this Profile

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This profile is based on FHIR Patient (R5) \r\n and provides tailored constraints to support rare disease data exchange initiatives.

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" }, "url": "https://rarecare.world/fhirv5/StructureDefinition/MyPatient", "version": "0.1", "name": "MyPatient", "title": "RareCare_Patient", "status": "draft", "experimental": true, "date": "2024-01-24", "contact": [ { "name": "Sahan Perera", "telecom": [ { "system": "email", "value": "sahanperera2015@gmail.com", "use": "work" } ] } ], "copyright": "RareCare.world", "fhirVersion": "5.0.0", "kind": "resource", "abstract": false, "type": "Patient", "baseDefinition": "http://hl7.org/fhir/StructureDefinition/Patient", "derivation": "constraint", "differential": { "element": [ { "id": "Patient.identifier", "path": "Patient.identifier", "min": 1 }, { "id": "Patient.identifier.period", "path": "Patient.identifier.period", "max": "0" }, { "id": "Patient.identifier.assigner", "path": "Patient.identifier.assigner", "max": "0" }, { "id": "Patient.active", "path": "Patient.active", "definition": "An active patient record refers to the status of a patient’s health information within a healthcare organization’s system, indicating whether or not the record is currently in use. A patient may be classified as inactive if they are deceased or have not been subject to follow-up for an extended period, leading the organization to consider their status inactive. Inactive status implies that the patient’s record is not actively accessed or updated within the organization’s current healthcare activities.", "min": 1 }, { "id": "Patient.name", "path": "Patient.name", "definition": "The name format comprises the first name followed by the last name. The inclusion of prefixes and suffixes is optional and not mandatory. The standard representation involves presenting the individual’s first name followed by their last name, providing flexibility in whether additional titles or designations are included in the overall naming structure." }, { "id": "Patient.name.use", "path": "Patient.name.use", "max": "0" }, { "id": "Patient.name.text", "path": "Patient.name.text", "min": 1 }, { "id": "Patient.name.family", "path": "Patient.name.family", "min": 1 }, { "id": "Patient.name.given", "path": "Patient.name.given", "min": 1, "max": "1" }, { "id": "Patient.name.period", "path": "Patient.name.period", "max": "0" }, { "id": "Patient.telecom", "path": "Patient.telecom", "definition": "Contact information is a set of details an individual can reach.", "comment": "Preferably, this includes both a telephone number and an email address. However, at a minimum, one of these contact methods is essential for effective communication. These details facilitate easy and direct communication with the individual, ensuring accessibility for inquiries, collaboration, or any other relevant purposes.", "min": 1 }, { "id": "Patient.telecom.system", "path": "Patient.telecom.system", "min": 1 }, { "id": "Patient.telecom.value", "path": "Patient.telecom.value", "min": 1 }, { "id": "Patient.gender", "path": "Patient.gender", "min": 1 }, { "id": "Patient.birthDate", "path": "Patient.birthDate", "definition": "The birthdate refers to the specific date on which an individual was born.", "comment": "It is a critical piece of personal information as it serves as the basis for calculating the individual’s age. In instances where the exact date of birth is unknown or only partial information is available, partial dates are allowed to capture the available information. It is important to note that the inclusion of birthtime is not necessary; the primary focus is on recording the date of birth for demographic and age-related purposes." }, { "id": "Patient.deceased[x]", "path": "Patient.deceased[x]", "definition": "The “deceased” status is an attribute indicating whether an individual is alive or deceased.", "comment": "A value of ‘1’ signifies that the individual is deceased. Alternatively, if the field value is a specific date, it indicates not only the deceased status but also the date on which the individual passed away. This field serves to convey vital information about an individual’s vital status, allowing for accurate and comprehensive record-keeping in various systems." }, { "id": "Patient.address", "path": "Patient.address", "definition": "The address information for an individual includes the details of their physical location.", "comment": "If the complete address is not available, providing at least the city or, at a minimum, the country level is considered adequate. Individuals may have multiple addresses, each associated with different uses or applicable periods. The “use” field is utilized to specify the purpose of the address, such as indicating whether it is an old address, home, work, or temporary residence.", "requirements": "This status is crucial for patient management and research purposes, ensuring accurate and up-to-date location details for effective communication and comprehensive data analysis.", "min": 1 }, { "id": "Patient.address.line", "path": "Patient.address.line", "max": "1" }, { "id": "Patient.maritalStatus", "path": "Patient.maritalStatus", "definition": "The marital status field encompasses the most recent civil status of a patient, with preferred values represented by codes derived from LOINC.", "min": 1 }, { "id": "Patient.maritalStatus.coding", "path": "Patient.maritalStatus.coding", "max": "1" }, { "id": "Patient.maritalStatus.coding.code", "path": "Patient.maritalStatus.coding.code", "min": 1 }, { "id": "Patient.multipleBirth[x]", "path": "Patient.multipleBirth[x]", "max": "0" }, { "id": "Patient.photo", "path": "Patient.photo", "max": "0" }, { "id": "Patient.contact", "path": "Patient.contact", "definition": "A contact party refers to an individual associated with the patient who can be contacted for various reasons.", "comment": "This may include family members, business contacts, guardians, or caregivers. The associated information for a contact party includes:\r\nRelationship to the Patient: Describes the connection or role the contact party has in relation to the patient (e.g., guardian, partner, friend). \r\nName: The full name of the contact party. \r\nTelephone Number: The contact party’s phone number for communication purposes. \r\nOrganization: If this information is included, the contact party is affiliated with a specific organization, \r\nThe use of LOINC answer list LL621-4 is preferred to standardize and categorize relationship types", "requirements": "This comprehensive data aids in efficient communication, especially in cases where reaching out to a designated contact party is necessary for patient-related matters." }, { "id": "Patient.contact.relationship", "path": "Patient.contact.relationship", "max": "1" }, { "id": "Patient.communication", "path": "Patient.communication", "max": "1" }, { "id": "Patient.generalPractitioner", "path": "Patient.generalPractitioner", "comment": "This field indicates the healthcare professional or care manager chosen by the patient to oversee their healthcare, encompassing primary care providers in a GP context or designated managers in community settings. It accommodates situations where multiple GPs may be recorded, such as students with both home and university GPs or “fly-in/fly-out” workers, including onsite and home GPs. This approach ensures comprehensive awareness of the patient’s medical needs in different contexts, facilitating coordinated and informed healthcare provision." }, { "id": "Patient.managingOrganization", "path": "Patient.managingOrganization", "comment": "There is only one managing organization for a specific patient record." }, { "id": "Patient.link", "path": "Patient.link", "max": "1" } ] } }