scholarly journals Erratum to: Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study

2017 ◽  
Vol 08 (04) ◽  
pp. e1-e1
Author(s):  
Carly Daley ◽  
Elizabeth Chen ◽  
Amelia Roebuck ◽  
Romisa Ghahari ◽  
Areej Sami ◽  
...  
Keyword(s):  
Qualitative Study ◽  
Personal Health Record ◽  
Personal Health ◽  
Health Record ◽  
Cardiac Device ◽  
Implantable Cardiac Device

scholarly journals Providing Patients with Implantable Cardiac Device Data through a Personal Health Record: A Qualitative Study

2017 ◽  
Vol 08 (04) ◽  
pp. 1106-1116 ◽  
Author(s):  
Carly Daley ◽  
Elizabeth Chen ◽  
Amelia Roebuck ◽  
Romisa Ghahari ◽  
Areej Sami ◽  
...  
Keyword(s):  
Remote Monitoring ◽  
Personal Health Record ◽  
Heart Rhythm ◽  
Personal Health ◽  
Health Record ◽  
Cardiac Device ◽  
Cardiology Clinic ◽  
Patients At Risk ◽  
Life Threatening ◽  
Implantable Cardiac Device

Background Patients at risk for sudden cardiac death or having suffered cardiac arrest may receive an implantable cardioverter defibrillator (ICD). This device provides monitoring and therapy for life-threatening heart rhythms. Remote monitoring of ICDs has decreased the time between abnormal heart rhythm events and clinic follow-up. Currently, the data transmitted from the device are reviewed and stored by the clinic, but patients do not have access to the data. While connecting patients directly with their ICD data has potential to enhance engagement in their care and improve health outcomes, patient attitudes and perceptions about receiving ICD data have not been explored. Objective This research is the first demonstration of delivering ICD data to patients through a personal health record (PHR) using a novel technical framework. The objective of this study was to use a PHR interface as a technology probe to explore patients' experiences with directly receiving their ICD data from remote monitoring. Methods We enrolled 21 patients with an ICD undergoing remote monitoring at a large outpatient cardiology clinic in Indiana, United States. Participants received their ICD data from remote monitoring through a PHR over 3 months. In-depth, semistructured interviews were conducted at 3 months and analyzed using thematic analysis. Results Participants were 36 to 86 years old, mean age (SD) of 67 (14) years, predominately male (76%), and white (95%). Key themes were ICD questions and concerns, experiences with remote monitoring, PHR use, and feedback about the ICD data summary. The findings showed that overall, patients desired information that provides reassurance, is easy to understand, and is presented in a meaningful way. Conclusion Sharing ICD data from remote monitoring requires adequate context and scaffolding to support patient understanding. Engaging patients with information that is useful and valuable to them through a PHR may require appropriate and individualized tailoring of information.

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

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.

scholarly journals How patients want to engage with their personal health record: a qualitative study

BMJ Open ◽  
2013 ◽  
Vol 3 (7) ◽  
pp. e002931 ◽  
Author(s):  
John William Kerns ◽  
Alexander H Krist ◽  
Daniel R Longo ◽  
Anton J Kuzel ◽  
Steven H Woolf
Keyword(s):  
Qualitative Study ◽  
Personal Health Record ◽  
Personal Health ◽  
Health Record

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

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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