Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design

Weitzman, Elissa R.; Kaci, Liljana; Mandl, Kenneth D.

doi:10.2196/jmir.1187

Cited by 96 publications

(90 citation statements)

References 20 publications

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“…One explanation is that patients who are accustomed to more powerful information tools in other aspects of life may expect greater functionality than merely seeing their information 49 50. Indeed, participants in this study wanted much more—including links to personalised recommendations, and resources and tools to help make information actionable to improve health, as provided by this IPHR.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2013

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ObjectiveTo assess factors related to use and non-use of a sophisticated interactive preventive health record (IPHR) designed to promote uptake of 18 recommended clinical preventive services; little is known about how patients want to use or be engaged by such advanced information tools.DesignDescriptive and interpretive qualitative analysis of transcripts and field notes from focus groups of the IPHR users and of patients who were invited but did not use the IPHR (non-users). Grounded theory techniques were then applied via an editing approach for key emergent themes.SettingPrimary care patients in eight practices of the Virginia Ambulatory Care Outcomes Research Network (ACORN).ParticipantsThree focus groups involved a total of 14 IPHR users and two groups of non-users totalled 14 participants.Outcomes/resultsFor themes identified (relevance, trust and functionality) participants indicated that endorsement and use of the IPHR by their personal clinician was vital. In particular, participants’ comments linked the IPHR use to: (1) integrating the IPHR into current care, (2) promoting effective patient–clinician encounters and communication and (3) their confidence in the accuracy, security and privacy of the information.ConclusionsIn addition to patients’ stated desires for advanced functionality and information accuracy and privacy, successful adoption of the IPHRs by primary care patients depends on such technology's relevance, and on its promotion via integration with primary care practices’ processes and the patient–clinician relationship. Accordingly, models of technological success and adoption, when applied to primary care, may need to include the patient–clinician relationship and practice workflow. These findings are important for healthcare providers, the information technology industry and policymakers who share an interest in encouraging patients to use personal health records.Trial RegistrationClinicaltrials.gov identifier: NCT00589173

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Section: Discussionmentioning

confidence: 99%

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

et al. 2013

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“…Adoption issues among healthcare providers include new workflow demands and resistance to change, inadequate technology literacy, responsibility for ensuring the accuracy and integrity of health information across multiple interconnected data systems, and confidentiality and privacy risks. 14 Ralston et al 55 found monthly user rates per 1000 enrollees in an online health maintenance organization (HMO) system were: medical test results reviews (46), medication refills (37), patienteprovider clinical messaging (27), after-visit summary review (27), medical condition review (20), appointment requests (10), immunization review (10), and allergy review (6). The adoption and use of PHRs reflect intense interest in patient health self-management, because PHRs can empower patients.…”

Section: Adoption and Usementioning

confidence: 99%

Personal health records: a scoping review

Archer

Fevrier-Thomas

Lokker

et al. 2011

J Am Med Inform Assoc

509

405

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Electronic personal health record systems (PHRs) support patient centered healthcare by making medical records and other relevant information accessible to patients, thus assisting patients in health self-management. We reviewed the literature on PHRs including design, functionality, implementation, applications, outcomes, and benefits. We found that, because primary care physicians play a key role in patient health, PHRs are likely to be linked to physician electronic medical record systems, so PHR adoption is dependent on growth in electronic medical record adoption. Many PHR systems are physician-oriented, and do not include patient-oriented functionalities. These must be provided to support self-management and disease prevention if improvements in health outcomes are to be expected. Differences in patient motivation to use PHRs exist, but an overall low adoption rate is to be expected, except for the disabled, chronically ill, or caregivers for the elderly. Finally, trials of PHR effectiveness and sustainability for patient self-management are needed.

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“…These PHRs can be stored with private sector based intermediaries such as Google Health or Microsoft HealthVault, also supporting the user-managed access paradigm. Research in the ehealth domain [25] has shown that the acceptance of such PHR systems suffers from issues related to privacy, autonomy, and accessibility.…”

Section: Aeds As An Infrastructure For T-governmentmentioning

confidence: 99%

Electronic Data Safes as an Infrastructure for Transformational Government? A Case Study

Pfister

Schwabe

2015

Lecture Notes in Computer Science

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This article introduces and explores the potential of an active electronic data safe (AEDS) serving as an infrastructure to achieve transformational government. An AEDS connects individuals and organizations from the private and the public sector to exchange information items related to business processes following the user-managed access paradigm. To realize the transformational government's vision of user-centricity, fundamental changes in the service provision and collaboration of public and private sector organizations are needed. Findings of a user study with a prototype of an AEDS are used to identify four barriers for the adoption of an AEDS in the light of transformational government: (1.) offering citizens unfamiliar services having the character of experience-goods; (2.) failing to fulfill common service expectations of the customers; (3.) failing to establish contextual integrity for data sharing, and, (4.) failing to establish and run an AEDS as a multi-sided platform providing an attractive business model. Abstract. This article introduces and explores the potential of an active electronic data safe (AEDS) serving as an infrastructure to achieve transformational government. An AEDS connects individuals and organizations from the private and the public sector to exchange information items related to business processes following the user-managed access paradigm. To realize the transformational government's vision of user-centricity, fundamental changes in the service provision and collaboration of public and private sector organizations are needed. Findings of a user study with a prototype of an AEDS are used to identify four barriers for the adoption of an AEDS in the light of transformational government: (1.) offering citizens unfamiliar services having the character of experience-goods; (2.) failing to fulfil common service expectations of the customers; (3.) failing to establish contextual integrity for data sharing, and, (4.) failing to establish and run an AEDS as a multi-sided platform providing an attractive business model. DOIKeywords: electronic data safes, transformational government, user-managed access, case study, barriers IntroductionIn many countries, electronic government (e-government) initiatives have been introduced that are progressing from the stage of information provisioning and simple transactions to more customer-centric stages of integrated service delivery [1]. Several egovernment maturity models and e-government definitions have been proposed [2] but, actually, many e-government initiatives resulted in digitizing existing practices and were not able to reach more mature stages. In recent years, the idea of "transformational government" (t-government) gained momentum which is defined as "[…] the ICTenabled operations, internal and external processes and structures to enable the realization of services that meet public-sector objectives such as efficiency, transparency, accountability and citizen centricity." [3] The realization of t-government entails fundamental ...

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Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design

Cited by 96 publications

References 20 publications

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

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

Personal health records: a scoping review

Electronic Data Safes as an Infrastructure for Transformational Government? A Case Study

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