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  1. FHIR Specification Feedback
  2. FHIR-6150

FamilyHistory needs actual resource not a simple List type such as the one in FamilyMemberHistory

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    • Icon: Change Request Change Request
    • Resolution: Not Persuasive
    • Icon: Low Low
    • FHIR Core (FHIR)
    • DSTU1
    • Clinical Genomics
    • FamilyMemberHistory
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      The move to List has in no way removed expressive capability. In fact, it has increased it because a "family history". List can include observations at the general family history level such as "no family history of breast cancer" that couldn't easily have been linked to the previous FamilyHistory resource. List has its own narrative (for the pedigree PDF), has the ability to capture author and author date, etc. The List resource can be used in exactly the same manner as the original FamilyHistory resource by embedding "contained" FamilyMemberHistories if desired. But it now supports those systems where individual family members are maintained as distinct entities with their own statuses and identifiers. The CG examples and profiles have been converted to the new design with no loss of information.

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      The move to List has in no way removed expressive capability. In fact, it has increased it because a "family history". List can include observations at the general family history level such as "no family history of breast cancer" that couldn't easily have been linked to the previous FamilyHistory resource. List has its own narrative (for the pedigree PDF), has the ability to capture author and author date, etc. The List resource can be used in exactly the same manner as the original FamilyHistory resource by embedding "contained" FamilyMemberHistories if desired. But it now supports those systems where individual family members are maintained as distinct entities with their own statuses and identifiers. The CG examples and profiles have been converted to the new design with no loss of information.
    • Rob/Laura: 6-0-0
    • Enhancement

    Description

      The recent change of the Resource to represent family history information in the continuous integration build ( previously called FamilyHistory and now called FamilyMemberHistory) from an object to a generic List type is a major step backwards. Assertions that are made regarding family history are more than just those made about a given relative ( previously called relation). A FamilyHistory FHIR resource needs to represent more items than making assertions regarding individual family members ( now called FamilyMemberHistory). The attributes that are lost include being able to make use of extensions to handle negation, the timestamp on when the family history was taken, assertions and interpretation made at the level when interogating the entire family, attaching a pdf or svg to represent the pedigree, assertions regarding the ancestry, results of clinical decision support algorithms using extension, free-text notes and/or comments made about the entire family, fall-back HTML. While some of these things can be handled with pushing items onto the new list structure, such as an attachment resource for the pedigree, other resources don't make sense. For instance, using an Obversation Resource to handle the negation seems semantically wrong. Obversations should be about items the clinician... well observes. Family history are assertions made from the patient and are hearsay in nature and should not be held to the same weight as 'true' observations made by a clinician. Finally , I am also not sure how this change was made without discussion with the Clinical Genomics working group, which I am on. Unfortunately, I won't be able to argue this point in person in Paris.

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            jonathan_holt Jonathan Holt
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              Updated:
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