Partnering with patients to support patient-centred personal health record access
File(s)
Author(s)
Freise, Lisa
Type
Thesis or dissertation
Abstract
Background: With rising pressures on healthcare systems, engaging patients in their health and care is receiving health policy attention. Simultaneously, personal health records (PHR)
are creating an opportunity for patients to access their health information, offering the possibility for patients to be active participants in their health and care. This research project
aims to investigate how access to PHR information can facilitate patient engagement in their health and care.
Methods: The research project starts with reviewing the literature narratively and systematically to form a basis for its subsequent mixed methods approach. The studies including data analytics, surveys, and interviews were designed to build upon each other.
Results: Patients are motivated and able to engage with their health and care through access to their PHR. However, their ability to use PHR effectively is limited by and dependent on various factors. The usability of a system itself and the type of information displayed can potentially hinder patients’ understanding and, hence, effective use of a system. But the way information is presented can also support information understanding. The use of PHR by patients can lead to perceived improvements in the quality of and satisfaction with care. However, not everyone uses PHR and benefits from them equally with digital health literacy being an important determinant of both use and perceived benefit. Many PHR users are able and willing to identify and respond to errors in their records, but further research is needed to inform mechanisms by which patients could partner with healthcare professionals to improve the accuracy of their PHR.
Conclusions: Patient engagement in their health and care via PHR access is certainly worthwhile as it comes with improvements in care quality and satisfaction with care. However, steps need to be taken to maximise these benefits and ensure no one is excluded from them.
are creating an opportunity for patients to access their health information, offering the possibility for patients to be active participants in their health and care. This research project
aims to investigate how access to PHR information can facilitate patient engagement in their health and care.
Methods: The research project starts with reviewing the literature narratively and systematically to form a basis for its subsequent mixed methods approach. The studies including data analytics, surveys, and interviews were designed to build upon each other.
Results: Patients are motivated and able to engage with their health and care through access to their PHR. However, their ability to use PHR effectively is limited by and dependent on various factors. The usability of a system itself and the type of information displayed can potentially hinder patients’ understanding and, hence, effective use of a system. But the way information is presented can also support information understanding. The use of PHR by patients can lead to perceived improvements in the quality of and satisfaction with care. However, not everyone uses PHR and benefits from them equally with digital health literacy being an important determinant of both use and perceived benefit. Many PHR users are able and willing to identify and respond to errors in their records, but further research is needed to inform mechanisms by which patients could partner with healthcare professionals to improve the accuracy of their PHR.
Conclusions: Patient engagement in their health and care via PHR access is certainly worthwhile as it comes with improvements in care quality and satisfaction with care. However, steps need to be taken to maximise these benefits and ensure no one is excluded from them.
Date Issued
2023-05-25
Date Awarded
2025-02-01
Copyright Statement
Attribution-Non Commercial-No Derivatives 4.0 International Licence (CC BY-NC-ND)
Advisor
Mayer, Erik
Lear, Rachael
Darzi, Ara
Sponsor
Peter Sowerby Foundation
National Institute for Health and Care Research
Publisher Department
Department of Surgery & Cancer
Publisher Institution
Imperial College London
Qualification Level
Doctoral
Qualification Name
Doctor of Philosophy (PhD)