Prerequisites of Personal Health Record for Chronic Kidney Disease: A Scoping Review and Evaluation of the Content Validity

Background: It is obvious that the Personal Health Record (PHR) is a major cornerstone for “improving the self-management of patient”. However, lack of an effective and comprehensive personal health record system prohibits the widespread use of PHRs. The aim of this study was to identify the core data sets and required functionalities for designing a PHRs for chronic kidney disease (CKD) management and assess their validity. Methods: It was a study including two phases. In the initial phase, a scoping review was conducted with the aim of determination the core data sets and required functionalities for designing PHRs. Then in the second phase, the validity of data items and functionalities was determined by 25 multidisciplinary experts. Results: 22 studies were eligible after screening 1335 titles and abstracts and reviewing 88 full texts. We determined 20 core data set and 8 required functionalities of PHRs. From the perspective of experts, ‘health maintenance’ and ‘advance directives’ were most often marked as useful but not essential, while ‘test and examination’, ‘medication list’ and ‘diagnosis and comorbid conditions” were predominantly considered as essential by all experts (n=25,100%). Conclusion: This research is a step that we have taken to identify prerequisites that could be used for the design, development, and implementation of an effective and comprehensive electronic personal health record.

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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

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01689-2 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Esmaeel Toni ◽

Habibollah Pirnejad ◽

Khadijeh Makhdoomi ◽

Azam Mivefroshan ◽

Zahra Niazkhani

Keyword(s):

Chronic Kidney Disease ◽

Health Literacy ◽

Kidney Disease ◽

Qualitative Study ◽

Personal Health Record ◽

Self Management ◽

Personal Health ◽

Health Record ◽

User Centered Design ◽

Electronic Personal Health Record

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.

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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

10.21203/rs.3.rs-457607/v1 ◽

2021 ◽

Author(s):

Esmaeel Toni ◽

Habibollah Pirnejad ◽

Khadijeh Makhdoomi ◽

Azam Mivefroshan ◽

Zahra Niazkhani

Keyword(s):

Chronic Kidney Disease ◽

Kidney Disease ◽

Qualitative Study ◽

Personal Health Record ◽

Self Management ◽

Personal Health ◽

Health Record ◽

User Centered Design ◽

Educational Content ◽

Electronic Personal Health Record

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 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 the implementation and adoption of an ePHR in nephrology care. Different users' requirements should inform the design and implementation of ePHR system especially in the context of CKD care. The insights gained can help ePHR designers and implementers to better support CKD patients in self-management.

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Integrated, Reliable and Cloud-Based Personal Health Record : A Scoping Review

Health Informatics - An International Journal ◽

10.5121/hiij.2016.5301 ◽

2016 ◽

Vol 5 (2/3) ◽

pp. 01-20 ◽

Cited By ~ 1

Author(s):

Jesus Romero ◽

Pablo Lopez ◽

Jose Luis Vazquez Noguera ◽

Cristian Cappo ◽

Diego P. Pinto-Roa ◽

...

Keyword(s):

Scoping Review ◽

Personal Health Record ◽

Personal Health ◽

Health Record

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Shared decision-making using personal health record technology: a scoping review at the crossroads

Journal of the American Medical Informatics Association ◽

10.1093/jamia/ocw172 ◽

2017 ◽

Vol 24 (4) ◽

pp. 857-866 ◽

Cited By ~ 22

Author(s):

Selena Davis ◽

Abdul Roudsari ◽

Rebecca Raworth ◽

Karen L Courtney ◽

Lee MacKay

Keyword(s):

Decision Making ◽

Shared Decision Making ◽

Scoping Review ◽

Personal Health Record ◽

The United States ◽

Personal Health ◽

Health Record ◽

Shared Decision ◽

Rigorous Research ◽

Patient Provider Communication

Abstract Objective. This scoping review aims to determine the size and scope of the published literature on shared decision-making (SDM) using personal health record (PHR) technology and to map the literature in terms of system design and outcomes. Materials and Methods. Literature from Medline, Google Scholar, Cumulative Index to Nursing and Allied Health Literature, Engineering Village, and Web of Science (2005–2015) using the search terms “personal health records,” “shared decision making,” “patient-provider communication,” “decision aid,” and “decision support” was included. Articles (n = 38) addressed the efficacy or effectiveness of PHRs for SDM in engaging patients in self-care and decision-making or ways patients can be supported in SDM via PHR. Results. Analysis resulted in an integrated SDM-PHR conceptual framework. An increased interest in SDM via PHR is apparent, with 55% of articles published within last 3 years. Sixty percent of the literature originates from the United States. Twenty-six articles address a particular clinical condition, with 10 focused on diabetes, and one-third offer empirical evidence of patient outcomes. The tethered and standalone PHR architectural types were most studied, while the interconnected PHR type was the focus of more recently published methodological approaches and discussion articles. Discussion. The study reveals a scarcity of rigorous research on SDM via PHR. Research has focused on one or a few of the SDM elements and not on the intended complete process. Conclusion. Just as PHR technology designed on an interconnected architecture has the potential to facilitate SDM, integrating the SDM process into PHR technology has the potential to drive PHR value.

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