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

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.

Rekam Kesehatan Elektronik: Kajian Model dan Prototipe Sistem Informasi Kesehatan untuk Industri 4.0. Bali, Indonesia

Revolusi Industri 4.0 membawa konsep-konsep seperti big data dan pemberdayaan individual melalui personalized medicine ke dalam ilmu kesehatan. Konsep-konsep ini dikejawantahkan dalam bentuk rekam kesehatan elektronik atau electronic personal health record (E-PHR). Dalam kajian ini penulis menjabarkan mengenai E-PHR, keuntungan, serta fasilitator dan kendala penerapannya. Penulis juga mengembangkan sebuah prototipe model sistem E-PHR yang dapat diterapkan untuk konteks Kabupaten Badung di Provinsi Bali, Indonesia.

Patient Empowerment Through a User-Centered Design of an Electronic Personal Health Record: A Qualitative Study of user Requirements in Chronic Kidney Disease

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.

A Longitudinal Perspective on User Uptake of an Electronic Personal Health Record for Diabetes, With Respect To Patient Demographics

Introduction: The growing prevalence of diabetes has increased the need for scalable technologies to improve outcomes. My Diabetes My Way (MDMW) is an electronic personal health record (ePHR) available to all people with diabetes in Scotland since 2010, associated with improved clinical outcomes among users. MDMW pulls data from a national clinician-facing informatics platform and provides self-management and educational information. This study aims to describe MDMW user demographics through time with respect to the national diabetes population, with a view to addressing potential health inequalities. Methods: Aggregate data were obtained retrospectively from the MDMW database and annual Scottish Diabetes Survey (SDS) from 2010 to 2020. Variables included diabetes type, sex, age, socioeconomic status, ethnicity, and glycemic control. Prevalence of MDMW uptake was calculated using corresponding SDS data as denominators. Comparisons between years and demographic sub-groups were made using Chi- Squared tests. Results: Overall uptake of MDMW has steadily increased since implementation. By 2020, of all people with T1D or T2D in Scotland, 13% were fully enrolled to MDMW (39,881/312,326). There was proportionately greater numbers of users in younger, more affluent demographic groups (with a clear social gradient) with better glycemic control. As uptake has increased through time, so too has the observed gaps between different demographic sub-groups. Conclusions: The large number of MDMW users is encouraging, but remains a minority of people with diabetes in Scotland. There is a risk that innovations like MDMW can widen health inequalities and it is incumbent upon healthcare providers to identify strategies to prevent this.

Factors Affecting the Behavioral Intention to Use Standalone Electronic Personal Health Record Applications by Adults in Egypt

Standalone electronic personal health record can be a useful tool that enables individuals to store, arrange and share their health information easily and they can build a history of their health timeline which is crucial for raising healthcare quality and better self-management, the adoption rate of these applications has been identified in several countries to be low and slowly progressing.Although there are some applications of standalone ePHR available in the market for usage free of charge but it’s almost not adopted at all, this study will investigate some of the factors that might affect the adoption of ePHR technology by adults in Egypt and provide business professionals a better picture for what can motivate or hinder the adoption process to achieve better adoption rates and eliminate the barriers.In order to ensure a comprehensive contextual analysis, researchers analyzed the research in hand with the perspective of the proposed contextual framework, the Nine Elements Framework/Model (Elsafty, 2018) that analyzes social studies research in general, and business/management reseaerches as well.Using the nine elements framework, the authors used it to discover the underlying factors that are causing the problems faced by the research in hand, and resulted in the coming contextual analysis defining the research scope and focus, which in the case of this paper is on Perceived usefulness and perceived ease of use were adapted from TAM that was initially developed by Fred Davis (1989) and they proved to have a high predictive power of behavioral intention in CHI context, The extensions of TAM including UTAUT & UTAUT2 seems to be irrelevant to this research context since UTAUT is more oriented towards the organizational context (Venkatesh et al., 2012) and UTAUT2 added factors, Price value seems to be irrelevant in this research context as we are already studying platforms that are provided free of charge, Hedonic motivation maybe irrelevant to this context as healthcare related service is mostly associated with seriousness and urgency, also testing unimplemented platforms that are not yet adopted makes from the habit unrealistic experience that may be inaccurate to measure.Since other several researches recommended extending these factors with other additional factors to make it more relevant to the healthcare consumer context (Kim & Park, 2012), these factors may include health-related factors, technology-related factors and personal-related factors. Findings in this research revealed that adoption rate in Egypt is still very low and high demand for this service which makes this research is significant as it’s trying to find out the reasons behind this gap, perceived usefulness, perceived ease of use, (privacy and security), eHealth literacy, personalization and awareness had a significant impact on behavioral intention to use standalone ePHR applications. Personalization was found to have the strongest effect on behavioral intention followed by perceived usefulness. Health status was found to have an insignificant effect on behavioral intention which indicates the interest of people with different health statuses in standalone ePHR.