Personal electronic health records: from biomedical research to people's health

Access to web technologies and the increased bandwidth and capacity of these systems has facilitated the development of personal electronic health records (PEHRs). This conference reports the key messages from the Friends of the National Library of Medicine (FNLM) meeting on PEHRs 'From Biomedical Research to People's Health' in May 2009. The conference provided a comprehensive overview of issues and best practice for PEHR. The key messages of the conference were: PEHR have the potential to ensure equity, continuity and healthcare quality. Electronic records may allow individuals to contribute to disease surveillance, public health and research in ways that were not previously possible. We need to prepare carefully for a 'brave new world' in which a small number of commercial organisations may become trusted custodians of the planet's medical information. Ethical dilemmas are already emerging from the use of PEHRs - largely stemming from our experiences within the UK. This report links the findings of this conference with key UK and European innovations. Informaticians, in conjunction with clinicians and solution providers, should both prepare for the realities of PEHR and more formally articulate their potential benefits and risks.