- Title Information
- Title
- Multi-source development of an integrated model for family health history
- Name:
Personal
- Name Part
- Chen, Elizabeth S.
- Role
- Role Term:
Text (marcrelator)
- author
- Name:
Personal
- Name Part
- Carter, Elizabeth W.
- Role
- Role Term:
Text (marcrelator)
- author
- Name:
Personal
- Name Part
- Winden, Tamara J.
- Role
- Role Term:
Text (marcrelator)
- author
- Name:
Personal
- Name Part
- Sarkar, Indra Neil
- Role
- Role Term:
Text (marcrelator)
- author
- Name:
Personal
- Name Part
- Wang, Yan
- Role
- Role Term:
Text (marcrelator)
- author
- Name:
Personal
- Name Part
- Melton, Genevieve B.
- Role
- Role Term:
Text (marcrelator)
- author
- Type of Resource
- text
- Genre (aat)
- papers (documents)
- Origin Information
- Date Created
(keyDate="yes", encoding="w3cdtf")
- 2015
- Language
- Language Term:
Code (ISO639-2B)
- eng
- Note
(displayLabel="Source")
- Electronic Health Record
- Note
(displayLabel="Source")
- Standards
- Note
(displayLabel="Source")
- Patient Tools
- Note
(displayLabel="Method")
- Model
- Abstract
- Objective: To integrate data elements from multiple sources for informing comprehensive and standardized collection of family health history (FHH). Materials and methods: Three types of sources were analyzed to identify data elements associated with the collection of FHH. First, clinical notes from multiple resources were annotated for FHH information. Second, questions and responses for family members in patient-facing FHH tools were examined. Lastly, elements defined in FHH-related specifications were extracted for several standards development and related organizations. Data elements identified from the notes, tools, and specifications were subsequently combined and compared. Results: In total, 891 notes from three resources, eight tools, and seven specifications associated with four organizations were analyzed. The resulting integrated FHH Model consisted of 44 data elements for describing source of information, family members, observations, and general statements about family history. Of these elements, 16 were common to all three source types, 17 were common to two, and 11 were unique. Intra-source comparisons also revealed common and unique elements across the different notes, tools, and specifications. Discussion: Through examination of multiple sources, a representative and complementary set of FHH data elements was identified. Further work is needed to create formal representations of the Integrated FHH Model, standardize values associated with each element, and inform context-specific implementations. Conclusions: There has been increased emphasis on the importance of FHH for supporting personalized medicine, bio-medical research, and population health. Multi-source development of an integrated model could contribute to improving the standardized collection and use of FHH information in disparate systems.
- Note:
funding
- This research was supported in part by the National Library of Medicine of the National Institutes of Health under award number R01LM011364
- Note
- Paper published as "Editor's Choice" in the Journal of the American Medical Informatics Association
- Subject (Local)
- Topic
- Family history
- Related Item:
Host
(displayLabel="Published in")
- Title Information
- Title
- Journal of the American Medical Informatics Association
- Origin Information
- Date Created
- 2014 Oct 21
- Date Created
(keyDate="yes", encoding="w3cdtf")
- 2014-10-21
- Physical Description
- Extent
- e67-80
- Identifier:
PubMed ID
- PMID: 25336591
- Identifier:
DOI
- 10.1136/amiajnl-2014-003092
- Access Condition:
use and reproduction
(href="https://creativecommons.org/licenses/by-nc/4.0/")
- This work is licensed under a
Creative Commons Attribution-NonCommercial 4.0 International License
- Access Condition:
logo
(href="https://i.creativecommons.org/l/by-nc/4.0/88x31.png")