User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers

Marchak, Jordan Gilleland; Cherven, Brooke; Lewis, Rebecca Williamson; Edwards, Paula J.; Meacham, Lillian R.; Palgon, Michael; Escoffery, Cam; Mertens, Ann C.

doi:10.1007/s00520-019-05199-w

Cited by 19 publications

(36 citation statements)

References 37 publications

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“…Patients can also view health professionals’ information, such as name of health worker [ 34 , 39 , 55 , 74 ], role [ 74 , 75 ], educational background [ 75 ], contact information [ 42 , 45 ], specialty [ 76 ], location [ 76 ], and pictures [ 46 , 55 , 59 , 74 , 77 , 78 ]. Patients can also view hospital information, such as location, contact info, address, navigation [ 70 ].…”

Section: Resultsmentioning

confidence: 99%

“…Health record [22,25,26,30,31,34,39,42,[44][45][46]55,59,66,68,70,[72][73][74][75][76][77][78] Allows patients to manage personal information and view information related to health providers and insurance.…”

Section: References Description Functionmentioning

confidence: 99%

“…Issues in implementation of the PHR a .25,29,33,35,37-39,51,53,61-63, 68,72,76,86,88-90,96,100,102,104,106-112] Ability of PHR to share or exchange data with other systems Interoperability[25,26,[32][33][34]42,45,47,54,55,57,[60][61][62][63][64][65]69,70,[72][73][74]76,77,83,92,94,97,103,108,110,[112][113][114][115][116][117][118][119][120][121][122] Safeguarding of data and personal information in PHR Security and privacy[24,25,[33][34][35][36][37]…”

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confidence: 99%

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Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review

Harahap¹,

Handayani²,

Hidayanto³

2021

J Med Internet Res

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Background Functionalities of personal health record (PHR) are evolving, and continued discussions about PHR functionalities need to be performed to keep it up-to-date. Technological issues such as nonfunctional requirements should also be discussed in the implementation of PHR. Objective This study systematically reviewed the main functionalities and issues in implementing the PHR. Methods This systematic review was conducted using Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines. The search is performed using the online databases Scopus, ScienceDirect, IEEE, MEDLINE, CINAHL, and PubMed for English journal articles and conference proceedings published between 2015 and 2020. Results A total of 105 articles were selected in the review. Seven function categories were identified in this review, which is grouped into basic and advanced functions. Health records and administrative records were grouped into basic functions. Medication management, communication, appointment management, education, and self-health monitoring were grouped into advanced functions. The issues found in this study include interoperability, security and privacy, usability, data quality, and personalization. Conclusions In addition to PHR basic and advanced functions, other supporting functionalities may also need to be developed based on the issues identified in this study. This paper provides an integrated PHR architectural model that describes the functional requirements and data sources of PHRs.

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Section: Resultsmentioning

confidence: 99%

Section: References Description Functionmentioning

confidence: 99%

mentioning

confidence: 99%

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Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review

Harahap¹,

Handayani²,

Hidayanto³

2021

J Med Internet Res

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“…Both usability tests were carried out in a laboratory setting (with one exception that was carried out at the person’s home) following the same procedure ( Textbox 1 ), which was informed by earlier work on mHealth usability studies [ 39 ]. In particular, we combined two common usability-testing approaches, task completion [ 40 ] and think-aloud technique [ 41 , 42 ], with additional observational data on navigation fluidity and navigation challenges. In doing so, we aimed to determine whether the app prototype was designed in such a way that users were able to fluently navigate it.…”

Section: Methodsmentioning

confidence: 99%

Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study

Amann¹,

Fiordelli²,

Brach³

et al. 2020

JMIR Mhealth Uhealth

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Background Spinal cord injury is a complex chronic health condition that requires individuals to actively self-manage. Therefore, an evidence-based, self-management app would be of value to support individuals with spinal cord injury in the prevention of pressure injuries. Objective The main objectives of this study were to (1) establish a co-design approach for developing a high-fidelity prototype app for the self-management of individuals with spinal cord injury, (2) design the prototype that resulted from this process, and (3) conduct the first usability assessment of the prototype app. Methods We adopted a co-design approach to develop an evidence-based app prototype. Starting from a preliminary content model (based on clinical guidelines for the prevention of pressure injuries) and three research-based user personas, we conducted an ideation workshop involving individuals with spinal cord injury and health care professionals. The ideation workshop formed the basis for two consecutive design sprints. The result of this co-design phase was an interactive app prototype. The prototype was evaluated in two rounds of usability testing (N=4 and N=15, respectively) using a combination of qualitative and quantitative methods. Results The co-design process resulted in a high-fidelity prototype with two key components: a self-management component and a communication component. The final prototype included a combination of features to support individuals with spinal cord injury in the prevention of pressure injuries, namely a smart camera, pressure injury diary, expert consultation, reminders, and knowledge repository. Findings of the usability testing showed that most participants navigated the app fluently with little back and forth navigation and were able to successfully complete a set of assigned tasks. These positive results are supported by the average system usability score achieved (78.5/100; range 47.5-95.0) and our qualitative analysis of the semistructured interviews. Despite an overall positive evaluation of the app prototype, we identified areas for improvement (eg, inclusion of a search function). Conclusions Individuals with spinal cord injury often need to navigate competing interests and priorities, paired with uncertainty about the accuracy and relevance of clinical recommendations. Understanding what matters to individuals with spinal cord injury can help guide the design of behavioral interventions that are useful and acceptable to these individuals in their daily lives. This study shows that involving individuals with spinal cord injury and health care professionals in co-designing a self-management app can foster knowledge cocreation at the intersection of lived experience, medical expertise, and technical solutions.

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“…They conducted structured interviews with 42 participants (28 users, 8 health care professionals, and 6 personal trainers) and user tests on 16 participants. Marchak et al [ 44 ] also applied the UCD methodology to develop and evaluate a web-based PHR for survivors of childhood cancer; they conducted FGIs and structured interviews with 28 patients (3 patients with pediatric cancer, 11 parents, and 14 health care providers), and a usability evaluation with 16 participants.…”

Section: Introductionmentioning

confidence: 99%

A Worker-Centered Personal Health Record App for Workplace Health Promotion Using National Health Care Data Sets: Design and Development Study

Park¹,

Kim²,

Chung³

et al. 2021

JMIR Med Inform

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Background Personal health record (PHR) technology can be used to support workplace health promotion, and prevent social and economic losses related to workers’ health management. PHR services can not only ensure interoperability, security, privacy, and data quality, but also consider the user’s perspective in their design. Objective Using Fast Healthcare Interoperability Resources (FHIR) and national health care data sets, this study aimed to design and develop an app for providing worker-centered, interconnected PHR services. Methods This study considered the user’s perspective, using the human-centered design (HCD) methodology, to develop a PHR app suitable for occupational health. We developed a prototype after analyzing quantitative and qualitative data collected from workers and a health care professional group, after which we performed a usability evaluation. We structured workers’ PHR items based on the analyzed data, and ensured structural and semantic interoperability using FHIR, Systematized Nomenclature of Medicine–Clinical Terms (SNOMED-CT), and Logical Observation Identifiers Names and Codes (LOINC). This study integrated workers’ health information scattered across different Korean institutions through an interface method, and workers’ PHRs were managed through a cloud server, using Azure API for FHIR. Results In total, 562 workers from industrial parks participated in the quantitative study. The preferred data items for PHR were medication, number of steps walked, diet, blood pressure, weight, and blood glucose. The preferred features were ability to access medical checkup results, health information content provision, consultation record inquiry, and teleconsultation. The worker-centered PHR app collected data on, among others, life logs, vital signs, and medical checkup results; offered health care services such as reservation and teleconsultation; and provided occupational safety and health information through material safety data sheet search and health questionnaires. The app reflected improvements in user convenience and app usability proposed by 19 participants (7 health care professionals and 12 end users) in the usability evaluation. The After-Scenario Questionnaire (ASQ) was evaluated with a mean score of 5.90 (SD 0.34) out of 7, and the System Usability Scale (SUS) was evaluated a mean score of 88.7 (SD 4.83) out of 100. Conclusions The worker-centered PHR app integrates workers’ health information from different institutions and provides a variety of health care services from linked institutions through workers’ shared PHR. This app is expected to increase workers’ autonomy over their health information and support medical personnel’s decision making regarding workers’ health in the workplace. Particularly, the app will provide solutions for current major PHR challenges, and its design, which considers the user’s perspective, satisfies the prerequisites for its utilization in occupational health.

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User-centered design and enhancement of an electronic personal health record to support survivors of pediatric cancers

Cited by 19 publications

References 37 publications

Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review

Functionalities and Issues in the Implementation of Personal Health Records: Systematic Review

Co-designing a Self-Management App Prototype to Support People With Spinal Cord Injury in the Prevention of Pressure Injuries: Mixed Methods Study

A Worker-Centered Personal Health Record App for Workplace Health Promotion Using National Health Care Data Sets: Design and Development Study

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