| ARCHETYPE ID | openEHR-EHR-EVALUATION.family_history.v0 |
|---|---|
| Concept | Family history |
| Description | Summary information about the significant health-related problems found in family members. |
| Use | Use to record a summary of information about problems or diagnoses found in family members. This information may be used to contribute to an assessment of risk to the individual from potentially inheritable conditions or initiation of preventive health activities. Traditionally the scope of family history has been focused on genetic factors or biomarkers as indicators of risk or potential risk. However the scope of this archetype explicitly includes the recording of information about problems or diagnoses that may be influenced by familial exposure of non-genetic family members to psychosocial or environmental factors as well. Examples that are relevant for non-genetic family members include exposure to toxins in the family environment, domestic violence, sexual abuse, alcoholism and other addictions. Non-genetic family members can include adopted or long term fostered children, those related by marriage, or other unrelated individuals who participate in the regular life and influence of the family. This archetype has been designed to include:
This archetype can be used within many contexts. For example, recording a family history entry within a clinical consultation; populating a Family History List; or to provide a summary statement within a Discharge Summary document. Additional detail about a family member's specific problem or diagnosis can be captured using the EVALUATION.problem_diagnosis archetype and specifying the 'Subject of Care' as the family member, rather than the subject of the health record. This archetype can be used as the basis for a Family Pedigree chart of health problems/diagnoses or to support estimations of risk of a condition based on prevalence in the family history or known biomarkers. It may be necessary to identify each family member specifically and not just by the relationship to the patient. For example, while there will be only one maternal grandmother, there may be many female maternal cousins. This may be required to ensure that a pedigree chart is accurate. It will also enable accurate amendments to the record for each identified family member. If the record is private and will not be shared, for reasons of clarity it may be preferable to record the relative's actual name. If the record, or part of the record, is to be shared, it may be more appropriate for the family member to be identified by a unique label or alias. |
| Misuse | Not to be used to record information about the relative or absolute risk of developing a condition due to family history - use the EVALUATION.health_risk archetype, including the CLUSTER.family_prevalence for details about the affected ratio of family members. Not to be used for contact tracing for infectious diseases requiring immediate action. Not to be used to record an exclusion of Family History - use the EVALUATION.exclusion-family_history archetype for this purpose. |
| Purpose | To record information about the occurrence of significant health-related problems in genetic and non-genetic family members - both alive and deceased. The intended scope of this archetype is deliberately kept loose to include the broadest range of problems or issues that might be found within families. It specifically includes known problems and diagnoses, identified biological markers, plus any relevant psychosocial factors and environmental factors. |
| References | Family History, draft archetype [Internet]. Australia, National eHealth Transition Authority, NEHTA Clinical Knowledge Manager. Authored: 2010 12 15. Available at: http://dcm.nehta.org.au/ckm/#showArchetype_1013.1.927 (last accessed 2015 03 05). Risk of condition based on family history, rejected archetype, openEHR Clinical Knowledge Manager [Internet]. openEHR Foundation. Authored: 2006 04 23. Available at: http://www.openehr.org/ckm/#showArchetype_1013.1.125 (last accessed 2015 03 05). HL7 Version 3 Standard: Clinical Genomics; Pedigree, Release 1. ANSI/HL7 V3 CGPED, R1-2007. Published 2007 05 07. Available at: http://www.hl7.org/implement/standards/product_brief.cfm?product_id=8 (last accessed 2015 03 05). Family History FHIR resource [Internet]. Health Level Seven International. Available at: http://www.hl7.org/implement/standards/fhir/familyhistory.html (last accessed 2015 03 24). |
| Copyright | © openEHR Foundation |
| Authors | Author name: Sam Heard Organisation: Ocean Informatics Email: sam.heard@oceaninformatics.com Date originally authored: 2010-12-15 |
| Other Details Language | Author name: Sam Heard Organisation: Ocean Informatics Email: sam.heard@oceaninformatics.com Date originally authored: 2010-12-15 |
| Other Details (Language Independent) |
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| Keywords | family, history, health, condition, problem, diagnosis, genetic, pedigree, genealogy, family history, relative, hereditary, family history |
| Lifecycle | in_development |
| UID | d4f81658-9caf-4a7e-9a61-78ef3585a207 |
| Language used | en |
| Citeable Identifier | 1013.1.863 |
| Revision Number | 0.0.1-alpha |
| protocol | |
| Last Updated | Last Updated: The date this Family History Summary was last updated. |
| Extension | Extension: Additional information required to capture local content or to align with other reference models/formalisms. For example: local information requirements or additional metadata to align with FHIR or CIMI equivalents. Include: All not explicitly excluded archetypes |
| data | |
| Summary | Summary: Narrative overview about problems, diagnoses, psychosocial, environmental and genetic markers that have been identified in family members. Use this field to capture unstructured family history information recorded in clinical records or to import textual data from existing/legacy clinical systems. |
| Per problem | Per problem: Details about the presence of a specific problem or diagnosis in family members. If the problem has a genetic predisposition within families, then only genetic relatives should be considered as part of this data. If the problem has psychosocial or environmental effects then non-genetic family members may also be included. |
| Problem name | Problem name: Identification of the problem or diagnosis, by name. This is the problem for which aggregated data involving all family members will be collected. Coding of the index problem with a terminology is preferred, where possible. |
| Present? | Present?: There is a positive family history of the index problem in one or more family members. Record as 'True' if the problem or diagnosis has been identified in family members. Allowed values: {true} |
| Description | Description: Narrative description about occurrence of the problem or diagnosis in family members. |
| Family prevalence | Family prevalence: Details about family prevalence of the identified problem or diagnosis. Include: openEHR-EHR-CLUSTER.family_ |
| Per family member | Per family member: Details about a specific family member. The data elements in this cluster will relate to the individual identified either by name or by alias. Repeat the use of the cluster for other family members. |
| Family member name | Family member name: Name of family member. For example: 'Aunt Susan' or 'Susan Smith'. However, for privacy reasons this may not be appropriate for recording, sharing or public display and in this situation the 'Alias' should be used. |
| Alias | Alias: An alternative name or label to uniquely identify a family member, without using a personal name which might publicly identify the individual. To be used to assist in distinguishing one individual from multiple family members with identical relationships. For example, the label to distinguish one specific sister from three known sisters might be 'eldest sister' 'sister with the red hair' or 'sister #1'. |
| Family member | Family member: Structured detail about the identified family member. Include: openEHR-EHR-CLUSTER.person_ |
| Relationship | Relationship: The relationship of the family member to the subject of care. For example: mother, father, maternal grandmother, or paternal uncle. Coding of the relationship with a terminology is preferred, where possible and including specification of maternal and paternal as required. |
| Date of birth | Date of birth: Full or partial date of birth of the family member. |
| Deceased? | Deceased?: Is the family member is deceased? Record as 'True' if family member is deceased. Allowed values: {true} |
| Age at death | Age at death: Exact or estimated age of the family member at death. Age of death can be useful if the problem/diagnosis which caused their death is being considered as a risk factor for the subject of the health record. For example: death of mother at young age increases the risk of |
| Date of death | Date of death: Full or partial date of death of the family member. Date of death may be useful in some situations in which the month of death may trigger decision support or identify groupings of disease. For example: environmental allergens triggering respiratory exaccerbations; or events such as Christmas. |
| Medical history | Medical history: Detail about problems or diagnoses for the family member. |
| Problem/diagnosis | Problem/diagnosis: Identification of the significant problem or diagnosis in the identified family member. Coding of the family member's problem or diagnosis with a terminology is preferred, where possible. May link from this data element to a detailed record of a Problem/Diagnosis using the EVALUATION.problem_diagnosis archetype with the Subject of Care set to the family member, not to the patient. |
| Clinical description | Clinical description: Narrative description or comments about clinical aspects of the family member's problem/diagnosis. |
| Age at onset | Age at onset: Estimated or actual age of the family member when the problem/diagnosis was clinically recognised. For health problems with multiple occurrences, this describes the first nown occurrence. |
| Cause of death? | Cause of death?: True if the problem/diagnosis was a direct cause of death in this family member. |
| Comment | Comment: Additional narrative about the family member not captured in other fields. |
| Biomarkers | Biomarkers: Detailed information about measurable indicators of a biological state or condition of the subject of record. For example: detailed information on BRCA mutations in family members. Note: More data elements will be needed in future to record detailed genetic marker information. |
| Biomarker description | Biomarker description: Description of risk-related biological markers identified in this family member. |
| Biomarker details | Biomarker details: Structured details about biological markers. Include: All not explicitly excluded archetypes |
| Multimedia | Multimedia: Mulitimedia representation of the family history. For example: a pedigree chart. Include: openEHR-EHR-CLUSTER.multimedia.v1 and specialisations |
| Other contributors | Tomas Alme, DIPS, Norway Rita Apelt, Department of Health,NT, Australia Vebjoern Arntzen, Oslo university hospital, Norway Koray Atalag, University of Auckland, New Zealand Silje Ljosland Bakke, Bergen Hospital Trust, Norway John Bennett, NEHTA, Australia Lars Bitsch-Larsen, Haukeland University hospital, Norway Diego Bosca, IBIME group, Spain Rong Chen, Cambio Healthcare Systems, Sweden Stephen Chu, Queensland Health, Australia David Evans, Queensland Health, Australia Shahla Foozonkhah, Ocean Informatics, Australia Einar Fosse, National Centre for Integrated Care and Telemedicine, Norway Samuel Frade, Marand, Portugal Tim Garden, NTG Department of Health, Australia Sebastian Garde, Ocean Informatics, Germany Jacquie Garton-Smith, Royal Perth Hospital and DoHWA, Australia Andrew Goodchild, NEHTA, Australia Sam Heard, Ocean Informatics, Australia (Editor) Lars Karlsen, DIPS ASA, Norway Mary Kelaher, NEHTA, Australia Shinji Kobayashi, Kyoto University, Japan Robert L'egan, NEHTA, Australia Heather Leslie, Ocean Informatics, Australia (Editor) Hugh Leslie, Ocean Informatics, Australia Hallvard Lærum, Oslo University Hospital, Norway Mike Martyn, The Hobart Anaesthetic Group, Australia Ian McNicoll, freshEHR Clinical Informatics, United Kingdom (Editor) Chris Mitchell, RACGP, Australia Stewart Morrison, NEHTA, Australia Bjoern Naess, DIPS ASA, Norway Jeremy Oats, NT Health, Australia Lynne Parsons, Primary and Community Health Services, Australia Jodie Pycroft, Adelaide Northern Division of General Practice Ltd, Australia Robyn Richards, NEHTA - Clinical Terminology, Australia Jussara Rotzsch, UNB, Brazil Anoop Shah, University College London, United Kingdom Elizabeth Stanick, Hobart Anaesthetic Group, Australia John Taylor, NEHTA, Australia Gordon Tomes, Australian Institute of Health and Welfare, Australia Richard Townley-O'Neill, NEHTA, Australia Donna Truran, ACCTI-UoW, Australia Jo Wright, NT Dept of Health, Australia (Editor) |
| Translators |