Electronic Personal Health Records: Emergence and Implications for the UK

Claudia Pagliari, Don E. Detmer, Peter Singleton

Research output: Book/ReportBook

Abstract

This report is based on an expert workshop on electronic Personal Health Records (ePHR) hosted by the Nuffield Trust (London). 15 participants, representing senior figures from the areas of clinical medicine, health policy, academia and consumer advocacy, were brought together to share information and exchange views on the emergence and potential of ePHRs and the implications for implementation in the UK context.

Despite localised experiences of electronic record access, there had been little explicit discussion of the ePHR concept within the UK. NHS England's fledgling patient portal "HealthSpace" was at an early stage of maturity, which offered this workshop an opportunity to influence the agenda.

The event was organised around a series of working papers dealing with concepts, theory, practical experience, research evidence and opinion. Across these domains, participants were encouraged to reflect on the relative advantages of alternative ePHR models, barriers and facilitators to adoption (e.g. patient/clinician acceptability, security/confidentiality), potential impact (individual/system/societal levels), limitations of existing evidence/research needs and implications for the NHS.

For this report, workshop notes and papers dealing with relevant concepts, theory, practical experience, research evidence and professional opinion were integrated with other literature sources to provide an overview of the current situation and issues arising.

Electronic Personal Health Records represent a relatively recent innovation and, although there is still little evidence to illustrate their effectiveness, their use is increasing World Wide. Emerging models of ePHR vary in complexity, interactivity and integration with the wider electronic health record (EHR), as well as the extent to which they are governed by the patient or provider and their accessibility by alternative healthcare professionals. The appropriateness of such models will be determined by individual patient utilities and features of the healthcare system and culture.

Participants expressed an overriding optimism around the potential of ePHRs for supporting patient empowerment and aiding clinical practice. This was thought to be consistent with policies advocating patient choice and self care and the trend towards increasing use of the World Wide Web (WWW) for health information, as well as addressing national and global visions for eHealth.
It was agreed that ePHRs have the potential to improve communication between providers and patients by sharing information, to enhance the quality of records by highlighting inaccuracies, and to reduce the burden of care by engaging patients in managing their own health and illness.

Experiences from limited implementations of ePHR in the United Kingdom, and elsewhere, suggest that patients have, on the whole, responded positively. While some express concerns over security and confidentiality, few problems have been reported and it would appear that potential risks are being traded-off against the utility gains afforded by ePHR (with individual variation). A key factor mediating this relationship is trust which has traditionally been enjoyed by doctors more than other professions and which research suggests is itself enhanced by shared record access.

While fully interactive and integrated ePHRs were considered a desirable goal for the NHS, the technical and economic challenges involved in ensuring secure and reliable data flows between NHS-Net and the WWW were recognised. Greater standards and policies for data sharing and access, and for ensuring interoperability, were perceived as facilitators.

In order for ePHRs to have benefit, they need to be appropriately integrated into the care process and changes in patient-clinician relationships must be anticipated and effectively managed. This is likely to require changes in professional practice and culture. Crucially, the design and introduction of ePHRs needs to be driven by research on users’ (clinicians and the public) requirements, attitudes and levels of risk tolerance, as well as evidence on how patients use e-records in practice and their impact on quality, efficiency and safety.
With these caveats, the participants were highly supportive of planned internet records access via NHS HealthSpace and keen to see the development and implementation of this service.

Suggested reference: Pagliari C, Detmer D and Singleton P (2007) Electronic Personal Health Records: emergence and implications for the UK. Research report. Nuffield Trust.
Original languageEnglish
Place of PublicationLondon
PublisherThe Nuffield Trust
Number of pages35
ISBN (Electronic)978-1-905030-22-3
ISBN (Print)ISBN-13: 978-1-905030-22-3
Publication statusPublished - 19 Mar 2007

Keywords

  • Personal Health Records
  • ELECTRONIC HEALTH RECORDS
  • Patient Access to Records
  • Patient Portals
  • Health Informatics
  • Public Engagement
  • eHealth
  • Digital Health
  • Health Policy
  • Implementation
  • citizen participation

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