Advancing Family Medicine Through Dyadic Electronic Medical Record Linkage in Dementia Care

Family physicians are well-positioned to support both persons living with dementia (PLWD) and their caregivers. However, current electronic medical record (EMR) systems do not capture the relational and interdependent nature of dementia care. Dyadic data, linking the records of persons living with dementia (PLWD) and their caregivers, could support more integrated, proactive, and personalized care. While there is growing interest in leveraging EMRs for this purpose, few systems enable routine dyadic linkage, limiting clinical utility and research capacity.This report describes the current state of dyadic EMR data linkage in Canada, drawing on a pilot study using the Canadian Primary Care Sentinel Surveillance Network (CPCSSN). We examined methods for identifying PLWD-caregiver dyads in primary care settings, including manual identification and algorithmic approaches using shared contact information. Both methods were feasible, but each faced challenges related to EMR compatibility, privacy regulations, and consent processes. The study highlights how CPCSSN infrastructure can be used to create de-identified, longitudinal data sets for research and surveillance, while also identifying critical gaps that limit clinical application.Our findings demonstrate that while EMRs offer a promising platform for linking dyadic data, system-level changes are needed to fully integrate caregiver information into routine care. This includes standardized fields, clearer privacy guidelines, and cross-sector data harmonization. Dyadic EMR linkage has the potential to inform research, improve quality of care, and guide policy development. Future efforts must balance innovation with feasibility and privacy, ensuring caregiver roles are visible and valued within primary care systems.Abstract available in: يبرع (Arabic); Deutsch (German); Español (Spanish); Francais (French); हिन्दी (Hindi); Indonesia (Indonesian); (Chinese); (Japanese); Portugues (Portuguese).

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Publication Details

Journal
The Annals of Family Medicine
Published
2026-06-30
DOI
https://doi.org/10.1370/afm.250494
Primary Topic
Electronic Health Records Systems
Type
article
Field-Weighted Citation Impact
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article

Advancing Family Medicine Through Dyadic Electronic Medical Record Linkage in Dementia Care

Matt Taylor, Kristina Marie Kokorelias, Kris Aubrey‐Bassler, Rachael Morkem et al.
The Annals of Family Medicine
Electronic Health Records Systems
article

Advancing Family Medicine Through Dyadic Electronic Medical Record Linkage in Dementia Care

Matt Taylor, Kristina Marie Kokorelias, Kris Aubrey‐Bassler, Rachael Morkem, Neil Drummond, Annie Robitaille, Keri Harvey, Dewdunee Marasinghe, Mary Helmer‐Smith, Stephanie Garies, Rebecca Theal, Kelly A. Pilato, Leanne Kosowan, Sabrina Wong, Alex Singer, Tyler Williamson, Mathew Grandy, Fazle Sharior, Lynn McCleary, David Barber, Linda Garcia
article en

Abstract

Family physicians are well-positioned to support both persons living with dementia (PLWD) and their caregivers. However, current electronic medical record (EMR) systems do not capture the relational and interdependent nature of dementia care. Dyadic data, linking the records of persons living with dementia (PLWD) and their caregivers, could support more integrated, proactive, and personalized care. While there is growing interest in leveraging EMRs for this purpose, few systems enable routine dyadic linkage, limiting clinical utility and research capacity.This report describes the current state of dyadic EMR data linkage in Canada, drawing on a pilot study using the Canadian Primary Care Sentinel Surveillance Network (CPCSSN). We examined methods for identifying PLWD-caregiver dyads in primary care settings, including manual identification and algorithmic approaches using shared contact information. Both methods were feasible, but each faced challenges related to EMR compatibility, privacy regulations, and consent processes. The study highlights how CPCSSN infrastructure can be used to create de-identified, longitudinal data sets for research and surveillance, while also identifying critical gaps that limit clinical application.Our findings demonstrate that while EMRs offer a promising platform for linking dyadic data, system-level changes are needed to fully integrate caregiver information into routine care. This includes standardized fields, clearer privacy guidelines, and cross-sector data harmonization. Dyadic EMR linkage has the potential to inform research, improve quality of care, and guide policy development. Future efforts must balance innovation with feasibility and privacy, ensuring caregiver roles are visible and valued within primary care systems.Abstract available in: يبرع (Arabic); Deutsch (German); Español (Spanish); Francais (French); हिन्दी (Hindi); Indonesia (Indonesian); (Chinese); (Japanese); Portugues (Portuguese).

The Annals of Family Medicine
Dalhousie University (CA), Memorial University of Newfoundland (CA), University Health Network (CA), University of British Columbia (CA), University of Ottawa (CA), University of Alberta (CA), University of Calgary (CA), Brock University (CA), Queen's University (CA), CARE Canada (CA), Sinai Health System (CA), University of Manitoba (CA)
Openalex Percentile: Top 4%
Electronic Health Records Systems
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