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Copyright (c) 2024 Abeer Mohammad Faisal Abduljabbar, Tahani Abdullah Obead Alshreef, Sanad Shouf Almutairi, Dalia Abdullah Almutairi, Abdulrahman Jazaa Alotaibi, Mtab Abdullah Alsahli, Abdulaziz Fehaid Khalaf Alqasir, Yasir Ali Abu Shamlah Ali Aqdi, Tahany Awaid Almotery, Fatimah Ibrahim Ahmed Awaf, Ahmed Mohammed Dulaym Alqahtani, Abdullah Saeed Aldawsari

This work is licensed under a Creative Commons Attribution 4.0 International License.
The Continuity of Care Record: A Review of Interoperability, Data Curation, and the "Single Source of Truth"
Corresponding Author(s) : Abeer Mohammad Faisal Abduljabbar
Saudi Journal of Medicine and Public Health, Vol. 1 No. 2 (2024)
Abstract
Background: The modern patient journey generates fragmented data across electronic health records, laboratory systems, and pharmacy networks, complicating clinicians' efforts to compile comprehensive patient information. This fragmentation can lead to medication errors, redundant testing, and potential patient harm, undermining value-based and patient-centered care. The promise of a unified Continuity of Care Record remains largely unfulfilled.
Aim: This narrative review aims to critically analyze the multifaceted challenge of creating a coherent, interoperable Continuity of Care Record. The review proposes a paradigm shift from passive data aggregation to active, multidisciplinary “record stewardship.”
Methods: A comprehensive literature search was conducted across PubMed, IEEE Xplore, CINAHL, and Scopus databases for English-language articles published between 2010 and 2024.
Results: The analysis identifies three key pillars for effective Clinical Care Record (CCR): Technical Interoperability, which grapples with syntactic and semantic challenges despite standards such as FHIR; Proactive Data Curation, which requires structured contributions from all care team members for contextual data; and Operational Governance, emphasizing the need for oversight to maintain data quality and integrity. Cross-disciplinary collaboration is crucial to tackle these challenges.
Conclusion: A cohesive Continuity of Care Record is crucial not just technically but as an organizational and clinical necessity. Achieving this requires a shift from viewing interoperability as simply data management to fostering a culture of collaborative record stewardship. A multidisciplinary team, guided by clear governance and current standards, is vital for creating a consistent narrative that offers clinicians a dependable, unified source of truth for clinical decision-making.
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- Ait Abdelouahid, R., Debauche, O., Mahmoudi, S., & Marzak, A. (2023). Literature review: clinical data interoperability models. Information, 14(7), 364. https://doi.org/10.3390/info14070364
- Adler-Milstein, J., & Jha, A. K. (2012). Sharing clinical data electronically: a critical challenge for fixing the health care system. JAMA, 307(16), 1695-1696. doi:10.1001/jama.2012.525
- Arnold, M. E., Buys, L., & Fullas, F. (2015). Impact of pharmacist intervention in conjunction with outpatient physician follow-up visits after hospital discharge on readmission rate. American Journal of Health-System Pharmacy, 72(11_Supplement_1), S36-S42. https://doi.org/10.2146/sp150011
- Ayaz, M., Pasha, M. F., Alzahrani, M. Y., Budiarto, R., & Stiawan, D. (2021). The Fast Health Interoperability Resources (FHIR) standard: systematic literature review of implementations, applications, challenges and opportunities. JMIR medical informatics, 9(7), e21929. https://doi.org/10.2196/21929
- Benson, T., & Grieve, G. (2016). Principles of health interoperability: SNOMED CT, HL7 and FHIR (Vol. 3). London: Springer.
- Budlong, H., Brummel, A., Rhodes, A., & Nici, H. (2018). Impact of comprehensive medication management on hospital readmission rates. Population health management, 21(5), 395-400. https://doi.org/10.1089/pop.2017.0167
- Cai, Y., Venkatachalam, I., Tee, N. W., Tan, T. Y., Kurup, A., Wong, S. Y., ... & Marimuthu, K. (2017). Prevalence of healthcare-associated infections and antimicrobial use among adult inpatients in Singapore acute-care hospitals: results from the first national point prevalence survey. Clinical Infectious Diseases, 64(suppl_2), S61-S67. https://doi.org/10.1093/cid/cix103
- Campbell, M., Liveris, M., Caruso Brown, A. E., Williams, A. L., Ngongo, W., Persell, S., ... & Adler, M. D. (2022). Assessment and evaluation in social determinants of health education: a national survey of US medical schools and physician assistant programs. Journal of general internal medicine, 37(9), 2180-2186. https://doi.org/10.1007/s11606-022-07498-1
- Chiang, M. F. (2021). Biomedical informatics: Computer applications in health care and biomedicine. Springer Nature.
- Chatterjee, A., Pahari, N., & Prinz, A. (2022). HL7 FHIR with SNOMED-CT to achieve semantic and structural interoperability in personal health data: a proof-of-concept study. Sensors, 22(10), 3756. https://doi.org/10.3390/s22103756
- Costello, J., Barras, M., Foot, H., & Cottrell, N. (2023). The impact of hospital-based post-discharge pharmacist medication review on patient clinical outcomes: a systematic review. Exploratory research in clinical and social pharmacy, 11, 100305. https://doi.org/10.1016/j.rcsop.2023.100305
- Demers, A. L. (2022). Addressing Food Insecurity Through Healthcare: A Case Study of Individual, Social, and System-Level Determinants of Food Clinic Utilization (Doctoral dissertation, The University of Toledo).
- Dixon, B. E., Wen, C., French, T., Williams, J. L., Duke, J. D., & Grannis, S. J. (2020). Extending an open-source tool to measure data quality: case report on Observational Health Data Science and Informatics (OHDSI). BMJ health & care informatics, 27(1), e100054. https://doi.org/10.1136/bmjhci-2019-100054
- Feldman, J. D., Otting, R. I., Otting, C. M., & Witry, M. J. (2018). A community pharmacist–led service to facilitate care transitions and reduce hospital readmissions. Journal of the American Pharmacists Association, 58(1), 36-43. https://doi.org/10.1016/j.japh.2017.09.004
- Forde‐Johnston, C., Butcher, D., & Aveyard, H. (2023). An integrative review exploring the impact of Electronic Health Records (EHR) on the quality of nurse–patient interactions and communication. Journal of advanced nursing, 79(1), 48-67. https://doi.org/10.1111/jan.15484
- Irizarry, T., DeVito Dabbs, A., & Curran, C. R. (2015). Patient portals and patient engagement: a state of the science review. Journal of medical Internet research, 17(6), e148. https://doi.org/10.2196/jmir.4255
- Louch, G., Albutt, A., Smyth, K., & O’Hara, J. K. (2022). What do primary care staff think about patients accessing electronic health records? A focus group study. BMC Health Services Research, 22(1), 581. https://doi.org/10.1186/s12913-022-07954-y
- Mandel, J. C., Kreda, D. A., Mandl, K. D., Kohane, I. S., & Ramoni, R. B. (2016). SMART on FHIR: a standards-based, interoperable apps platform for electronic health records. Journal of the American Medical Informatics Association, 23(5), 899-908. https://doi.org/10.1093/jamia/ocv189
- Michael, A. H. (2018). Electronic Health Records Interoperability: A Correlational Study in California Acute Care Hospitals (Doctoral dissertation, University of Phoenix).
- Neadley, K., McMichael, G., Freeman, T., Browne-Yung, K., Baum, F., Pretorius, E., ... & Boyd, M. (2021). Capturing the social determinants of health at the individual level: a pilot study. Public Health Research and Practice, 31(2), e30232008. https://doi.org/10.17061/phrp30232008
- Ozonze, O., Scott, P. J., & Hopgood, A. A. (2023). Automating electronic health record data quality assessment. Journal of Medical Systems, 47(1), 23. https://doi.org/10.1007/s10916-022-01892-2
- Payne, T. H., TenBroek, A. E., Fletcher, G. S., & Labuguen, M. C. (2010). Transition from paper to electronic inpatient physician notes. Journal of the American Medical Informatics Association, 17(1), 108-111. https://doi.org/10.1197/jamia.M3173
- Piasecki, J., & Cheah, P. Y. (2022). Ownership of individual-level health data, data sharing, and data governance. BMC Medical Ethics, 23(1), 104. https://doi.org/10.1186/s12910-022-00848-y
- Rahman Jabin, M. S., & Hammar, T. (2022). Issues with the Swedish e-prescribing system–an analysis of health information technology-related incident reports using an existing classification system. Digital Health, 8, 20552076221131139. https://doi.org/10.1177/20552076221131139
- Reynolds, T. L., Cobb, J. G., Steitz, B. D., Ancker, J. S., & Rosenbloom, S. T. (2023). The state-of-the-art of patient portals: adapting to external factors, addressing barriers, and innovating. Applied Clinical Informatics, 14(04), 654-669. DOI: 10.1055/s-0043-1770901
- Shortliffe, E. H., & Cimino, J. J. (2006). Biomedical Informatics Computer Applications in Health Care and Biomedicine. Springer.
- Smithman, M. A., Haggerty, J., Gaboury, I., & Breton, M. (2022). Improved access to and continuity of primary care after attachment to a family physician: longitudinal cohort study on centralized waiting lists for unattached patients in Quebec, Canada. BMC Primary Care, 23(1), 238. https://doi.org/10.1186/s12875-022-01850-4
- Temte, J. L., Beasley, J. W., Holden, R. J., Karsh, B. T., Potter, B., Smith, P., & O'Halloran, P. (2020). Relationship between number of health problems addressed during a primary care patient visit and clinician workload. Applied ergonomics, 84, 103035. https://doi.org/10.1016/j.apergo.2019.103035
- Vashisht, R., Patel, A., Dahm, L., Han, C., Medders, K. E., Mowers, R., ... & Butte, A. J. (2023). Second-line pharmaceutical treatments for patients with type 2 diabetes. JAMA Network Open, 6(10), e2336613-e2336613. doi:10.1001/jamanetworkopen.2023.36613
- Walsh, S., de Jong, E. E., van Timmeren, J. E., Ibrahim, A., Compter, I., Peerlings, J., ... & Lambin, P. (2019). Decision support systems in oncology. JCO clinical cancer informatics, 3, 1-9. https://doi.org/10.1200/CCI.18.00001
- Weiskopf, N. G., & Weng, C. (2013). Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research. Journal of the American Medical Informatics Association, 20(1), 144-151.
- Zadeh, P. E., & Tremblay, M. C. (2016). A review of the literature and proposed classification on e-prescribing: Functions, assimilation stages, benefits, concerns, and risks. Research in Social and Administrative Pharmacy, 12(1), 1-19. https://doi.org/10.1016/j.sapharm.2015.03.001
- Zarour, M., Alenezi, M., Ansari, M. T. J., Pandey, A. K., Ahmad, M., Agrawal, A., ... & Khan, R. A. (2021). Ensuring data integrity of healthcare information in the era of digital health. Healthcare technology letters, 8(3), 66-77. https://doi.org/10.1049/htl2.12008
References
Ait Abdelouahid, R., Debauche, O., Mahmoudi, S., & Marzak, A. (2023). Literature review: clinical data interoperability models. Information, 14(7), 364. https://doi.org/10.3390/info14070364
Adler-Milstein, J., & Jha, A. K. (2012). Sharing clinical data electronically: a critical challenge for fixing the health care system. JAMA, 307(16), 1695-1696. doi:10.1001/jama.2012.525
Arnold, M. E., Buys, L., & Fullas, F. (2015). Impact of pharmacist intervention in conjunction with outpatient physician follow-up visits after hospital discharge on readmission rate. American Journal of Health-System Pharmacy, 72(11_Supplement_1), S36-S42. https://doi.org/10.2146/sp150011
Ayaz, M., Pasha, M. F., Alzahrani, M. Y., Budiarto, R., & Stiawan, D. (2021). The Fast Health Interoperability Resources (FHIR) standard: systematic literature review of implementations, applications, challenges and opportunities. JMIR medical informatics, 9(7), e21929. https://doi.org/10.2196/21929
Benson, T., & Grieve, G. (2016). Principles of health interoperability: SNOMED CT, HL7 and FHIR (Vol. 3). London: Springer.
Budlong, H., Brummel, A., Rhodes, A., & Nici, H. (2018). Impact of comprehensive medication management on hospital readmission rates. Population health management, 21(5), 395-400. https://doi.org/10.1089/pop.2017.0167
Cai, Y., Venkatachalam, I., Tee, N. W., Tan, T. Y., Kurup, A., Wong, S. Y., ... & Marimuthu, K. (2017). Prevalence of healthcare-associated infections and antimicrobial use among adult inpatients in Singapore acute-care hospitals: results from the first national point prevalence survey. Clinical Infectious Diseases, 64(suppl_2), S61-S67. https://doi.org/10.1093/cid/cix103
Campbell, M., Liveris, M., Caruso Brown, A. E., Williams, A. L., Ngongo, W., Persell, S., ... & Adler, M. D. (2022). Assessment and evaluation in social determinants of health education: a national survey of US medical schools and physician assistant programs. Journal of general internal medicine, 37(9), 2180-2186. https://doi.org/10.1007/s11606-022-07498-1
Chiang, M. F. (2021). Biomedical informatics: Computer applications in health care and biomedicine. Springer Nature.
Chatterjee, A., Pahari, N., & Prinz, A. (2022). HL7 FHIR with SNOMED-CT to achieve semantic and structural interoperability in personal health data: a proof-of-concept study. Sensors, 22(10), 3756. https://doi.org/10.3390/s22103756
Costello, J., Barras, M., Foot, H., & Cottrell, N. (2023). The impact of hospital-based post-discharge pharmacist medication review on patient clinical outcomes: a systematic review. Exploratory research in clinical and social pharmacy, 11, 100305. https://doi.org/10.1016/j.rcsop.2023.100305
Demers, A. L. (2022). Addressing Food Insecurity Through Healthcare: A Case Study of Individual, Social, and System-Level Determinants of Food Clinic Utilization (Doctoral dissertation, The University of Toledo).
Dixon, B. E., Wen, C., French, T., Williams, J. L., Duke, J. D., & Grannis, S. J. (2020). Extending an open-source tool to measure data quality: case report on Observational Health Data Science and Informatics (OHDSI). BMJ health & care informatics, 27(1), e100054. https://doi.org/10.1136/bmjhci-2019-100054
Feldman, J. D., Otting, R. I., Otting, C. M., & Witry, M. J. (2018). A community pharmacist–led service to facilitate care transitions and reduce hospital readmissions. Journal of the American Pharmacists Association, 58(1), 36-43. https://doi.org/10.1016/j.japh.2017.09.004
Forde‐Johnston, C., Butcher, D., & Aveyard, H. (2023). An integrative review exploring the impact of Electronic Health Records (EHR) on the quality of nurse–patient interactions and communication. Journal of advanced nursing, 79(1), 48-67. https://doi.org/10.1111/jan.15484
Irizarry, T., DeVito Dabbs, A., & Curran, C. R. (2015). Patient portals and patient engagement: a state of the science review. Journal of medical Internet research, 17(6), e148. https://doi.org/10.2196/jmir.4255
Louch, G., Albutt, A., Smyth, K., & O’Hara, J. K. (2022). What do primary care staff think about patients accessing electronic health records? A focus group study. BMC Health Services Research, 22(1), 581. https://doi.org/10.1186/s12913-022-07954-y
Mandel, J. C., Kreda, D. A., Mandl, K. D., Kohane, I. S., & Ramoni, R. B. (2016). SMART on FHIR: a standards-based, interoperable apps platform for electronic health records. Journal of the American Medical Informatics Association, 23(5), 899-908. https://doi.org/10.1093/jamia/ocv189
Michael, A. H. (2018). Electronic Health Records Interoperability: A Correlational Study in California Acute Care Hospitals (Doctoral dissertation, University of Phoenix).
Neadley, K., McMichael, G., Freeman, T., Browne-Yung, K., Baum, F., Pretorius, E., ... & Boyd, M. (2021). Capturing the social determinants of health at the individual level: a pilot study. Public Health Research and Practice, 31(2), e30232008. https://doi.org/10.17061/phrp30232008
Ozonze, O., Scott, P. J., & Hopgood, A. A. (2023). Automating electronic health record data quality assessment. Journal of Medical Systems, 47(1), 23. https://doi.org/10.1007/s10916-022-01892-2
Payne, T. H., TenBroek, A. E., Fletcher, G. S., & Labuguen, M. C. (2010). Transition from paper to electronic inpatient physician notes. Journal of the American Medical Informatics Association, 17(1), 108-111. https://doi.org/10.1197/jamia.M3173
Piasecki, J., & Cheah, P. Y. (2022). Ownership of individual-level health data, data sharing, and data governance. BMC Medical Ethics, 23(1), 104. https://doi.org/10.1186/s12910-022-00848-y
Rahman Jabin, M. S., & Hammar, T. (2022). Issues with the Swedish e-prescribing system–an analysis of health information technology-related incident reports using an existing classification system. Digital Health, 8, 20552076221131139. https://doi.org/10.1177/20552076221131139
Reynolds, T. L., Cobb, J. G., Steitz, B. D., Ancker, J. S., & Rosenbloom, S. T. (2023). The state-of-the-art of patient portals: adapting to external factors, addressing barriers, and innovating. Applied Clinical Informatics, 14(04), 654-669. DOI: 10.1055/s-0043-1770901
Shortliffe, E. H., & Cimino, J. J. (2006). Biomedical Informatics Computer Applications in Health Care and Biomedicine. Springer.
Smithman, M. A., Haggerty, J., Gaboury, I., & Breton, M. (2022). Improved access to and continuity of primary care after attachment to a family physician: longitudinal cohort study on centralized waiting lists for unattached patients in Quebec, Canada. BMC Primary Care, 23(1), 238. https://doi.org/10.1186/s12875-022-01850-4
Temte, J. L., Beasley, J. W., Holden, R. J., Karsh, B. T., Potter, B., Smith, P., & O'Halloran, P. (2020). Relationship between number of health problems addressed during a primary care patient visit and clinician workload. Applied ergonomics, 84, 103035. https://doi.org/10.1016/j.apergo.2019.103035
Vashisht, R., Patel, A., Dahm, L., Han, C., Medders, K. E., Mowers, R., ... & Butte, A. J. (2023). Second-line pharmaceutical treatments for patients with type 2 diabetes. JAMA Network Open, 6(10), e2336613-e2336613. doi:10.1001/jamanetworkopen.2023.36613
Walsh, S., de Jong, E. E., van Timmeren, J. E., Ibrahim, A., Compter, I., Peerlings, J., ... & Lambin, P. (2019). Decision support systems in oncology. JCO clinical cancer informatics, 3, 1-9. https://doi.org/10.1200/CCI.18.00001
Weiskopf, N. G., & Weng, C. (2013). Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research. Journal of the American Medical Informatics Association, 20(1), 144-151.
Zadeh, P. E., & Tremblay, M. C. (2016). A review of the literature and proposed classification on e-prescribing: Functions, assimilation stages, benefits, concerns, and risks. Research in Social and Administrative Pharmacy, 12(1), 1-19. https://doi.org/10.1016/j.sapharm.2015.03.001
Zarour, M., Alenezi, M., Ansari, M. T. J., Pandey, A. K., Ahmad, M., Agrawal, A., ... & Khan, R. A. (2021). Ensuring data integrity of healthcare information in the era of digital health. Healthcare technology letters, 8(3), 66-77. https://doi.org/10.1049/htl2.12008