Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease

Abstract Background To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient’s education, counseling, and self-management. Fitting ePHRs within the daily practices of c...

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Autores principales:	Esmaeel Toni, Habibollah Pirnejad, Khadijeh Makhdoomi, Azam Mivefroshan, Zahra Niazkhani
Formato:	article
Lenguaje:	EN
Publicado:	BMC 2021
Materias:	ePHR Electronic personal health record User requirements Self-management Developing country Chronic kidney disease Computer applications to medicine. Medical informatics R858-859.7
Acceso en línea:	https://doaj.org/article/08c167b34be04ef1854d06c6bdb2aec4
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spelling	oai:doaj.org-article:08c167b34be04ef1854d06c6bdb2aec42021-11-28T12:26:12ZPatient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease10.1186/s12911-021-01689-21472-6947https://doaj.org/article/08c167b34be04ef1854d06c6bdb2aec42021-11-01T00:00:00Zhttps://doi.org/10.1186/s12911-021-01689-2https://doaj.org/toc/1472-6947Abstract Background To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient’s education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users’ needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use. Methods A qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology. Results Participants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients’ conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use. Conclusions We focused on the ePHR’s content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients’ needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR’s adoption.Esmaeel ToniHabibollah PirnejadKhadijeh MakhdoomiAzam MivefroshanZahra NiazkhaniBMCarticleePHRElectronic personal health recordUser requirementsSelf-managementDeveloping countryChronic kidney diseaseComputer applications to medicine. Medical informaticsR858-859.7ENBMC Medical Informatics and Decision Making, Vol 21, Iss 1, Pp 1-15 (2021)
institution	DOAJ
collection	DOAJ
language	EN
topic	ePHR Electronic personal health record User requirements Self-management Developing country Chronic kidney disease Computer applications to medicine. Medical informatics R858-859.7
spellingShingle	ePHR Electronic personal health record User requirements Self-management Developing country Chronic kidney disease Computer applications to medicine. Medical informatics R858-859.7 Esmaeel Toni Habibollah Pirnejad Khadijeh Makhdoomi Azam Mivefroshan Zahra Niazkhani Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
description	Abstract Background To improve chronic disease outcomes, self-management is an effective strategy. An electronic personal health record (ePHR) is a promising tool with the potential to support chronic patient’s education, counseling, and self-management. Fitting ePHRs within the daily practices of chronic care providers and chronic patients requires user-centered design approaches. We aimed to understand users’ needs and requirements in chronic kidney disease (CKD) care to consider in the design of an ePHR to facilitate its implementation, adoption, and use. Methods A qualitative study was conducted in a major Iranian nephrology center including inpatient and outpatient settings in 2019. We conducted 28 semi-structured interviews with CKD patients, nurses, and adult nephrologists. To confirm or modify the requirements extracted from the interviews, a focus group was also held. Data were analyzed to extract especially those requirements that can facilitate implementation, adoption, and sustained use based on the PHR adoption model and the unified theory of acceptance and use of technology. Results Participants requested an ePHR that provides access to up to date patient information, facilitates patient-provider communication, and increases awareness about patient individualized conditions. Participants expected a system that is able to cater to low patient e-health literacy and high provider workload. They requested the ePHR to include purposeful documentation of medical history, diagnostic and therapeutic procedures, tailored educational content, and scheduled care reminders. Messaging function, tailored educational content to individual patients’ conditions, and controlled access to information were highly valued in order to facilitate its implementation, adoption, and use. Conclusions We focused on the ePHR’s content and functionalities in the face of facilitators and/or barriers envisioned for its adoption in nephrology care. Designers and implementers should value CKD patients’ needs and requirements for self-management such as providing personalized education and counseling (on the basis of their condition and risk factors), health literacy, and disease progression levels. The socio-technical aspects of care also need further attention to facilitate ePHR’s adoption.
format	article
author	Esmaeel Toni Habibollah Pirnejad Khadijeh Makhdoomi Azam Mivefroshan Zahra Niazkhani
author_facet	Esmaeel Toni Habibollah Pirnejad Khadijeh Makhdoomi Azam Mivefroshan Zahra Niazkhani
author_sort	Esmaeel Toni
title	Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
title_short	Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
title_full	Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
title_fullStr	Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
title_full_unstemmed	Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
title_sort	patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease
publisher	BMC
publishDate	2021
url	https://doaj.org/article/08c167b34be04ef1854d06c6bdb2aec4
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Patient empowerment through a user-centered design of an electronic personal health record: a qualitative study of user requirements in chronic kidney disease

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