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Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study

Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study

Personal health records (PHRs) are being developed to resolve these problems and increase patient empowerment [15,16]. In contrast to a patient portal, a PHR’s contents are managed and maintained by individuals, not health care institutions, as illustrated by the definitions presented in Textbox 1. Individuals are able to access and manage their health information and share it with authorized family members or caretakers to help them in managing their care.

Martijn R Brands, Lotte Haverman, Jelmer J Muis, Mariëtte H E Driessens, Stephan Meijer, Felix J M van der Meer, Marianne de Jong, Johanna G van der Bom, Marjon H Cnossen, Karin Fijnvandraat, Samantha C Gouw

JMIR Hum Factors 2024;11:e48359

Associations Between Patient-Reported Outcome Measures of Physical and Psychological Functioning and Willingness to Share Social Media Data for Research Among Adolescents With a Chronic Rheumatic Disease: Cross-Sectional Survey

Associations Between Patient-Reported Outcome Measures of Physical and Psychological Functioning and Willingness to Share Social Media Data for Research Among Adolescents With a Chronic Rheumatic Disease: Cross-Sectional Survey

Reference 34: “You get reminded you're a sick person”: personal data tracking and patients with multiple Reference 59: Willingness to share personal health record data for care improvement and public health : a survey of experienced personal health record users Reference 61: Consumer willingness to share personal digital information for health-related usespersonal

Elissa R Weitzman, Machiko Minegishi, Rachele Cox, Lauren E Wisk

JMIR Pediatr Parent 2023;6:e46555

Patient-Centered Digital Health Records and Their Effects on Health Outcomes: Systematic Review

Patient-Centered Digital Health Records and Their Effects on Health Outcomes: Systematic Review

Examples of patient-centered digital health records include patient portals and personal health records (PHRs). Patient-centered digital health records differ in the volume and detail of the provided medical data, functionalities, and level of patient control, as shown in Textbox 1. Highly engaged patients are reported to have increased disease knowledge, better self-management, more self-efficacy, and improved clinical outcomes [14-16].

Martijn R Brands, Samantha C Gouw, Molly Beestrum, Robert M Cronin, Karin Fijnvandraat, Sherif M Badawy

J Med Internet Res 2022;24(12):e43086

Evaluation of mHealth Apps for Diverse, Low-Income Patient Populations: Framework Development and Application Study

Evaluation of mHealth Apps for Diverse, Low-Income Patient Populations: Framework Development and Application Study

Messages or a reminder function helped app users stay motivated in their plan, manage medications, and organize personal health information [29,32-36]. Cost was a domain included in our scoring framework because some past studies showed increased engagement if patients paid for the app. However, there is a question as to whether this would be an undue barrier for patients with low income [27].

Shreya Sharma, Katherine Gergen Barnett, John (Jack) Maypole, Rebecca Grochow Mishuris

JMIR Form Res 2022;6(2):e29922

Patients’ Adoption of Electronic Personal Health Records in England: Secondary Data Analysis

Patients’ Adoption of Electronic Personal Health Records in England: Secondary Data Analysis

An electronic personal health record (e PHR) has been defined by the Markle Foundation as “an electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure and confidential environment” [1].

Alaa Ali Abd-Alrazaq, Ali Abdallah Alalwan, Brian McMillan, Bridgette M Bewick, Mowafa Househ, Alaa T AL-Zyadat

J Med Internet Res 2020;22(10):e17499

Metrics for Outpatient Portal Use Based on Log File Analysis: Algorithm Development

Metrics for Outpatient Portal Use Based on Log File Analysis: Algorithm Development

Patient portals are Web-based platforms administered by health care service providers that enable patients to access data held in their personal health record. Meaningful Use (MU), the US federal program that sought the promulgation of electronic health records (EHRs), and its associated incentives resulted in the widespread adoption of patient portals [1]. A notable component of MU required health care organizations to focus on improving patient engagement, specifically through the use of patient portals.

Gennaro R Di Tosto, Ann Scheck McAlearney, Naleef Fareed, Timothy R Huerta

J Med Internet Res 2020;22(6):e16849

Factors Affecting Patients’ Use of Electronic Personal Health Records in England: Cross-Sectional Study

Factors Affecting Patients’ Use of Electronic Personal Health Records in England: Cross-Sectional Study

Electronic personal health records (e PHRs) refer to secure Web-based tools that enable individuals to access and manage their medical records and share them with trusted others [1]. More advanced e PHRs provide additional functionalities, such as scheduling appointments, requesting prescription refills, messaging providers, requesting referrals, and educational tools [2-4].

Alaa Ali Abd-Alrazaq, Bridgette M Bewick, Tracey Farragher, Peter Gardner

J Med Internet Res 2019;21(7):e12373

Consumer-Mediated Data Exchange for Research: Current State of US Law, Technology, and Trust

Consumer-Mediated Data Exchange for Research: Current State of US Law, Technology, and Trust

Such apps are often called untethered or standalone personal health records [62-65]. The word “untethered” means that they operate independently from a particular provider and/or EHR vendor (see Textbox 1). These apps are existent: App stores return numerous results when entering the words “personal health records” into the search fields. We call attention to some that are notable. At least two vendors of consumer-facing apps, both relying on portal download technology, promote their research utility.

Yiscah Bracha, Jacqueline Bagwell, Robert Furberg, Jonathan S Wald

JMIR Med Inform 2019;7(2):e12348

Patient Engagement as Measured by Inpatient Portal Use: Methodology for Log File Analysis

Patient Engagement as Measured by Inpatient Portal Use: Methodology for Log File Analysis

Patient portals can foster increased patient engagement, and frequent users of outpatient health applications, portals, and personal health records show improvement in both risk factors for chronic diseases [3-7] and health outcomes [8,9].

Timothy R Huerta, Naleef Fareed, Jennifer L. Hefner, Cynthia J Sieck, Christine Swoboda, Robert Taylor, Ann Scheck McAlearney

J Med Internet Res 2019;21(3):e10957

Use and Effects of Patient Access to Medical Records in General Practice Through a Personal Health Record in the Netherlands: Protocol for a Mixed-Methods Study

Use and Effects of Patient Access to Medical Records in General Practice Through a Personal Health Record in the Netherlands: Protocol for a Mixed-Methods Study

Personal health records (PHRs) are tools that have been developed to facilitate patient involvement in decision making, disease management, and care coordination [5]. PHRs are electronic health records that are, in varying degrees, controlled by patients [6]. Standalone PHRs are completely managed by patients [6].

Maria MT Maria Margaretha Vreugdenhil, Rudolf B Kool, Kees van Boven, Willem JJ Assendelft, Jan AM Kremer

JMIR Res Protoc 2018;7(9):e10193